Chiggety-Check In

October 16, 2020 tragerstreit1 Comment

That was the longest break I’ve ever taken. Between no longer having a job, and COVID warping the reality of time itself, the last three months have gone by in an instant and an eon at the same time.

It’s been long enough I think I need to do a general check-in. So that’s what this blog post will be all about. If you don’t care, that’s totally cool and I will have something else for you very soon.

Strength
My FRS scale has gone down a point or two. I’m beginning to notice weakness in my arms now. I can still wiggle my fingers and grasp things between my first finger knuckle and my thumb. That’s going away though. My laptop is becoming too heavy to manage. I can still just about move my toes, I can’t kick with any real strength, but I can stand as long as I’m leaning heavily on something else. This means I can use the walker for a step or two, but I haven’t tested anything longer than a couple steps lately. There’s not really any way to pick me up off the ground if I fall, here, so I’m not going to take stupid risks. I’m still able to transfer myself to my wheelchair, and to the toilet from there, so I’m still pretty independent. I can still write a little bit, especially if I’m using a special pen that one of my blog readers was kind enough to send me. Along with some lovely edible treats. The pen she sent me is a kind of crutch for my finger, and it is much more easy to control with fingers that are weak. I’m not going to be writing any new novels anytime soon, but I can still sign my name and fill out short forms.

Breath
For the longest time, we weren’t able to test my breathing because Covid. When you’re dealing with a disease spread by droplets and aerosols, the last thing you want is someone purposely and forcibly blowing air into your face. Last month during my medical trial though, after getting a Covid test to prove I was clean, we were able to test my forced vital lung capacity. The Covid test sucked so bad. They dug around in the very back of my sinus cavity and I felt like I was a dead body being prepared for mummification and they were going to pull my brain out through my nose. I was coughing and sneezing and I watery for a couple of hours after the test. It sucked, is what I’m saying. The last time we tested my breathing back in March I was at 52%. When this all started I was at 115%, to give you an idea. This last trip I tested at 46%. Quite a drop. I am definitely feeling this change, I am so much more easily out of breath. I am still breathing okay this, I only noticed when I exert myself somehow. If I lose my breath it takes me a bit longer to catch it back. There’s no need for breathing apparatus yet, except the AVAPS machine that I use at night. I’ve still got some time.

Eating
I need help cutting up my food, but I can still feed myself. I have not begun choking on food or having things go down the wrong pipe – at least no more than average people do. It’s awful when I do choke on my own spit though, because in order to get my breath back I have to take these huge ragged breaths in to be able to cough it out, and it makes this horrible death rattley noise when I do it. It scares the living shit out of everyone around me, and I don’t have the breath to explain to them that I’m all right – as long as I’m choking I’m still breathing – but it’s gonna sound like I’m dying for a minute. Which is not to say that I’m not also scared, being unable to breathe is one of the worst things in the world, but I know that the choking is only temporary. And even if I do pass out, there’s a couple of minutes before any possibility of brain damage sets in, and my airway will probably be cleared out by somebody attempted CPR and up be fine again. I have not had to make any concession to the disease with regards to how I eat. So far, we haven’t had to make any concessions to the disease in regards to what I eat, either. I am still fat under medical advice. I have an obscene amount of junk food in my room for snacking on. I mean, obscene. I’ve got a little three drawer shelf unit full to the brim, and two square baskets that slide into IKEA furniture full. I have a habit of craving something obscure, and then allowing myself to get that thing because fuck it, I’m dying, but the only way I’ll be able to find it on Amazon or wherever is by the case. So now I’ve got a case of whatever. People also gift me edible things all the time, because they are amazing, and they don’t want to burden me down with material things but they do want to give me a present. Candy is perfect in that regard. And I love it. I love it all. The problem is I don’t actually eat that much junk food, so will have a couple of pieces of whatever and then it just sits here while everything else piles up around. Hence, three drawers and two baskets. This isn’t a complaint, at all. I love candy. And obscure Australian treats, and macadamia nuts, and pop tarts, and marzipan, and Lara bars, and Apple chips, and every other thing that is currently shoved in to my little space. Love it.

Speech
My voice is becoming affected. If I talk for too long my voice goes a little wobbly and raspy. This is most likely due to my breathing more than anything, there isn’t enough breath being forced out when I speak to make my voice strong. I can still enunciate properly, and get my point across. But something’s happening there.

Mental
ALS doesn’t really affect your cognitive behavior, which is all at once the best and worst thing about this disease. You retain your faculties, but eventually you become trapped in your own body with no way to communicate, still perfectly aware and understanding of everything around you. There are some cognitive issues possible though, and I’m wondering if I’m having problems with that. It seems recently that I have much more of a problem getting my point across because my thoughts are so scattered. It could quite possibly also just be ADHD or something, but I’ve never noticed it so much as in the last year. I have lots of other ADHD traits so who knows. I was never formally diagnosed with that but I also never formally sought out a diagnosis for that. My brain has always gone very quickly in circles and I seem to say something completely unrelated to what we were talking about; but I do have a definite path that I used to arrive at what I said. We were talking about chocolate, which makes me think about dogs being unable to eat chocolate, which makes me think about a cute dog video I saw with a dog biting at a stream of air from a compressor, which makes me think of really windy weather, which makes me think of another video of an umbrella rolling down the beach with dramatic music, which makes me think of going to the beach. And that’s why when you say “I really like this dark chocolate”, I respond “we should go to the beach soon”. There’s a path there, a definite way I arrived where I did, you just don’t see it. Lately I am having trouble even explaining that path out loud, even though my brain understands completely.

Emotional
This one. This is the one I’m struggling with the most, if I’m being honest. I have the absolute worst time being unable to help myself. All my life I have been entirely self reliant, and any help I accepted was on my own terms. I obviously don’t have that luxury anymore. Friends come over and help me unpack, and I can literally do nothing to help them, and that eats at me. Even though I know they don’t mind, and are even happy to do so. I sit here in my room and see something that needs to be done, and it would take me all of five minutes to take care of it forever if I were able-bodied. But I’m not. And so it must become this hour-long effort to get someone here with enough time to spare, and explain what needs to be done, and then have them do it. And so much remains undone because it seems so stupid to call someone in here just to push a thumbtack in that had fallen out of the wall. It is frustrating in a way that I have never thought possible. And it absolutely eats at me to know that it’s just going to get worse. More than my own death, I fear being a burden. And my friends and family can say all they want, that I’m not a burden, but I will never be able to believe that. And that’s just how it is. Still, I have many more good days than bad days. I try to take things at face value as they come and be gracious about the help I do receive. I mean, I’m still going to completely obsess over it mentally and examine it from every angle in minute detail And stare at the ceiling until 3 o’clock in the morning thinking about it, but… um… Where was I going with that.

Anyway.

House
We are slowly but surely getting into this house and settling in. It is taking an excruciatingly long time because of the three people living here only one of them is able-bodied and he has a job. Thanks to some amazing friends who have come over to lend a hand, we are much further along than we would otherwise be. For example this is what my study looks like now!

Neato torpedo. The place is actually beginning to resemble my living space now. We’ve been pulling things out of boxes that I haven’t looked at in over five years because they were packed up from the house that I owned and then just put into storage while I lived in the apartment. It’s nice to be able to go through these things, and get rid of so much. My friend Tamra did all of the work you see up there. She is absolutely an amazing person and I’m lucky to know her. We have some semblance of the living room, rather than boxes piled upon tables and couches, you could almost sit in it. We are still discovering the um.. Character that this house has. Like the skeleton of a rat in a rat trap in the crawlspace. And the very interesting decisions or more owners made in regards to the electrical wiring. And duct placement. Our back porch is still a mess of boxes and other things needing to be sorted and there’s an entire storage unit out there, full of even more stuff from my old storage that we need to go through. We are taking it a little bit at a time. This house feels much more like a home now, already, and it will only become homier.

Travel
I am still participating in a medical trial which necessitates traveling by plane to San Francisco once a month. It’s usually a two or three day trip, but it seems to take half the month to prepare and recover from it. As per my previous post, traveling in a wheelchair is not easy. I can’t tell you much about the trial itself, except that I do undergo a spinal tap each and every time. It’s… becoming routine. Which is not something I ever thought I’d say – spinal taps aren’t something I would ever think someone could get used to? But here we are. I can, however, slip you this link which details some of the preliminary findings of the trial in general. The results are looking pretty good.

Tofersen Safe, Appears to Slow Disease Progression in SOD1 ALS Patients, Phase 1/2 Trial Shows

Outside influences
I have to keep all of my mental and emotional facilities trained to what’s immediately around me, because the outside world is pretty fucking scary right now. I live near Portland, which the president is trying to paint as a lawless expanse of criminals and terrorists, but really there’s protests happening in two square blocks in the inner city and the damage is mostly confined to the federal buildings. Driving through downtown is not unsafe. The president has promised a tax break should he get reelected, which would mean disability becoming unfunded by next year, so I’m pretty scared about that. I’m really scared about the slide into fascism that our country is taking and the wannabe dictator going unchecked when he says really dangerous shit. Some really scary shit going on outside and I can’t do anything about it, so I do my best to bury my head and just not think about it. Sometimes that works. Sometimes it takes Ativan. Otherwise I spend every waking minute angry and terrified. I cannot wait for a time when a week can go by and I don’t even think about the president. I hope I live to see that.

Overall though there’s nothing too horrible or too awesome to report. I’m settling into the new normal at the house, settling into the new normal of my disease day by day, and settling into a sort of routine. One of my absolute biggest stresses was finding a house, and getting this place has helped immeasurably. So I don’t really have all that much to complain about. Overall I’m doing pretty good. I still feel like I have some time. I still have things to do, things to say, cats to pet.

And all this junk food to consume.

Five

April 1, 2019April 1, 2019 tragerstreit2 Comments

Five years ago today, my life was split in two. My life B.C. (Before Crisis) and A.D. (After Diagnosis)

Five years ago I was told I was going to die. Pretty horribly. My prognosis wasn’t great. ALS typically kills you in 3 to 5 years. I had a feeling I had a few years – my progression was pretty slow. Six months after exhibiting any symptoms, I was still on my feet with no assistance, no degradation in my hands, breathing was excellent, swallowing and speech still perfect.

Only ten percent of people with ALS live longer than 10 years. I optimistically vowed to be among them. (….as if I have any control.)

It’s five years later, and I’m still doing pretty well, all things considered. I may make ten years yet, though I don’t think so, honestly. I’m definitely showing signs of wear. I can no longer stand, let alone walk, without assistance. When I try REAL hard, I can still sliiiiightly move the big toe of my left foot sometimes. My hands are near useless garbage meat noodles,
my posture like a T.Rex . I can curl my fingers in but not flex them out, the only digits I still have some control over is my thumbs. I type with the knuckles of my index fingers. Bladder control is completely a thing of the past. My breathing is getting shitty, but it’s nothing I need assistance with, yet.

This last month, I’ve started to exhibit bulbar symptoms. Mannnnnnnnnnnnnn it’s hard to admit that. I’ve been biting my tongue in my sleep, but luckily I already had a night guard so it’s not a problem. No choking or drooling or slurring yet, but my tongue sometimes gets a little tired if I’m eating something really chewy or hard.

It’s not the end of me, but I’m starting to think I can see it from here.

Not sure I’ve got another five years, but I’m going to try like hell. I’m pretty confident I won’t make it to fifty years old. (..This disease sucks, man, don’t get it.)

BUT.

BUT!!!

I have outlived the average. Some folks don’t even get one year. I’ve gotten FIVE. So far. It’s been such a rare privilege to make friends with my own death, to know what’s coming and have a chance to plan for it. My employer had amazing benefits and was completely understanding. My friends, my circle, they have my back in ways I never would have dared to expect. I was already death positive and prepared to think about my own demise in very real ways. I am doing SO WELL, all things considered. I was positioned to handle this with some grace and lots of support.

This sucks, but it could have been so. much. worse.

Tonight, instead of mourning my life that won’t be, I can celebrate the life I’ve had so far. Old school – I’m throwing a freaking pizza party to mark beating the typical prognosis. It’s going to be great to be with my planets, to eat and have some laughs and be grateful for five years of life so far. A very full life containing an amazing cast, fantastic sets, a very interesting plot. I will have hopefully been a source of light for someone, a sliver of kindness, maybe a laugh or two. I have cool tattoos and cute cats and enough stickers to have my own boutique. I am eating delicious things with the best people.

When people ask how I’m doing, I tell them “so far, so good”.

And I really, truly mean it. My life, she don’t suck, you know?

Here’s to another five years. Let’s see where this road leads.

Not My Husband

February 26, 2019February 28, 2019 tragerstreit2 Comments

We pulled up to the parking lot, slid into the disabled spot, and J activated the ramp. (Common. Rote. Standard.) He unfastened all of the tiedowns connecting my chair to the vehicle, and stepped back so that I could navigate my exit. (As usual. Like always.)

This time however, we had a witness. I mean, we often have a witness – the van makes a lot of noise when it deploys the ramp and the sounds tends to attract gazes. This witness was just vocal. (Uncommon. Nonstandard. Weird.) Our witness that night was parked beside us and made herself known by exclaiming how wonderful the van was and how lucky I was to have it. It was so cool, she said, the way I could just drive my chair right up inside and park up front. I agreed with her, of course; commenting on the marvelous freedom it affords me, and we spoke for a little while about how it was important to me that I was able to ride alongside the driver seat and not have a rear entrance van – making me effectively cargo. We spoke also about the minor problems I have had with said van (this was before the brakes melted), about the lengths I went to in order to purchase it in the first place, but mainly we had a pleasant chat about the marvel of modern engineering that this man was and how much freedom it afforded me. She then turned to J, beaming, “and you’re so lucky to have a good husband to help you.”

…We get that a lot.

I didn’t correct her. We never do.

To be fair, he used to be my husband. Now he’s my best friend. Because of that, there is a very easy intimacy between us, a lack of distance that typically exists even with the closest friendships. He hugs me a lot, we have excellent non-verbal communication between us, and it’s easy for an outsider to mistake our relationship for that of a married couple. We live in a touch-starved society, and here is this guy who can so casually rub my shoulders or hold my hand when I am in an emotional crisis, who is cutting my food for me and escorting me everywhere, so OBVIOUSLY he must be my husband, right?

But yes, I agreed – I am so incredibly lucky to have him.

I am jealous of people who get diagnosed with ALS who have a spouse, if I’m being fair and honest with myself. Although intellectually I understand that no relationship is guaranteed, and sometimes marriages don’t last through a terminal disease, most of them do. Till death did they part. Having someone that intimate with you, that connected with you, and consistently present for you – I am so incredibly jealous of that. You have a built-in partner through all of this bullshit. Not a guaranteed slave at your beck and call or anything, but the security of having someone who will of course be there to fetch you a glass of water when you need it, to help you to the toilet when you’re at that point of helplessness.

((I absolutely know to the core of me that if I had been married when I was diagnosed, I would totally have given my partner the option to walk away forever and pursue a different life without dealing with me dying – even though I know there’s no way they ever would. Probably. I gave all of my friends the same option. Some of them took it, but most of them didn’t. Dealing with a terminal disease sucks for everyone.))

Even though your primary medical caregiver should never be your spouse, there is a lot of automatic care that is assumed with being married to someone with a complicated disease. I don’t have that built-in automatic assurance. I don’t have someone sleeping in the bed beside me who can help me turn over at 3 AM. I don’t have someone sharing the same space as me to whom I can turn for petty little things and I do not mind asking, because they are already around and the thing I need is so minor. Instead, I live with my blind mother who can’t tend to a lot of those stupid little things I’d like done, such as to open the window blinds for me or light a candle or move these five books to a different bookshelf. It’s kind of a major undertaking for her, and impossible for me. I can call her into the room to take a dish away, but I’m lacking someone who would be sitting beside me anyway and would automatically be taking my dish with his or hers. A built-in partner to help me navigate all the fuckery.

What I do have however, is this amazing human being who has stepped up to provide a lot of the day-to-day shit that needs doing, without needing to be asked. When my planned caregiver left me, J stepped in with no complaint and an easy grace. And I am very very lucky in that, since we used to be married, I am very comfortable with him and have a built-in intimacy that I simply don’t have with any of the rest of my friends. I’m not embarrassed at the end of the day when he drops me off at my apartment to ask him to unhook my bra for me before he leaves because it’s very simple for him to do, very very difficult for me to do, and the dude has seen me naked a lot so who even cares. Eventually I won’t have a choice but to develop the same intimacy with us a lot of people, be they friends or paid caregivers. But for now, he is the one I turned to when I woke up in the middle of the night and couldn’t get out of bed to pee fast enough and suddenly needed someone to change my sheets. After I spent the rest of the night sleeping on a towel because it was 4am for fuck’s sake. I was embarrassed to ask, of course; it’s not an easy thing to tell another human being that you, a grown-ass woman, wet the bed last night so thank God for mattress protectors but could you please change my bed for me? But since he is my ex-husband, that intimacy already exists to a certain level (I mean, the man held a bloody barf bag for me after I had post-tonsillectomy nausea soooooooo everything else is easy-peasy after that, surely), and it was very organic for us to slide into this new development together. It is much easier to admit weakness to someone who has lived with you for 10 years and seeing you already go through some serious shit. We survived divorce; dealing with this terminal disease together is practically a piece of cake compared to that.

I am so lucky to have him.

I love him more than… Probably every other human being on this planet if I’m being honest. He is the best one.

As of this last Valentine’s Day, it was 10 years ago we were married. I’ve known him nearly 20. He is my best friend, my primary caregiver, my confidant, my buddy, my chauffeur, my personal assistant, my first and true love. I am a very, very lucky woman to have him in my life, to have been able to maintain this level of friendship even after our romantic relationship fell apart. I personally don’t understand being able to have an intimate relationship with someone for 10 years of your life, and then just walk away from it when that relationship goes wrong and never speak to that person again. It’s unfathomable to me. Literally no one on this planet knows me as well as he does. Not everyone can do that though, let go of the sense of failure and hurt and maintain a positive relationship afterwards. For me though, there was literally no other option. Even though the romance part of it didn’t work out, I love him to the ends of the earth and with every fiber of my being. That love is just different now.

I guess what I’m trying to say is that J is pretty neat. I like him a lot.

I just felt like I should state that for the record.

Faith Versus Proof

February 10, 2019 tragerstreit1 Comment

Hey. So…

…First and foremost I apologize in advance, because this is going to get very exclamation point heavy and rambling. I can already tell. I know the gist of what I want to say, but not quite how I’m going to get there. I’ve spent a lot of the past four days completely speechless. In the best way. In a way I never thought possible.

So I guess I will start with reiterating that I am – and have always been, and almost to the level of naivety – an optimist. Even on my way to the appointment in which I was diagnosed with a terminal disease, I felt to my core that things are going to be okay. On my way home from that appointment, I still felt that way; although my definition of okay had changed. For all of my life, and especially for all of this shitty journey with this sucky disease, I knew – KNEW! – my tribe would rally when I needed them. My anxiety lies to me every day, and it lied so much harder and longer when I was younger about the tribe I had; or specifically, that I didn’t have the tribe I thought I did. I knew I was loved, of course, but my anxiety loves to tell me that I don’t have the level of love and support that I would like to think. Once I was diagnosed, that particular anxiety has fucked off forever because my faith in my tribe was swapped for concrete proof. People I didn’t even know very well showed up out of the woodwork to help. People it never even would have occurred to me would show up, did. In full force and with open hearts. When I had to leave my house and cram my life into a much smaller apartment, the core optimist in me knew I would have some help when I asked for it. Concrete proof arrived in the form of 14 friends showing up that day.

I am loved and I knew this. I am loved and you proved this.

I’ve kind of always been a mom friend. Caretaker. I considered it my job to make sure that my friends were okay, basing so much of my pride on my own self-reliance. I am the helper, not the helped. I knew I had people I could rely on for help, but I focused so much of my life and energy on proving to myself and to the world at large that I didn’t need them to. That has been the singular hardest part of this whole stupid disease so far. Admitting that I do in fact need them to. Will in fact increasingly rely upon them to. Will be completely unable to do anything by myself, at all, at some point. My life will become nothing but relying on other people. That’s been the worst part. Not losing my ability to walk, not being unable to control something so basic as my bladder, not losing my job, but knowing that I am going to be completely, utterly helpless. My strongest personality trait, my core sense of identity and pride, taken from me. It’s suuuuuuuuuper shitty.

In the early days of my diagnosis, I had Danielle. Thanks to her, in the early days I didn’t have to ask for anything because she asked on my behalf. We both knew that everything about this disease was going to be expensive, and she set up a CrowdRise fundraiser on my behalf. She organized my garage sale amazingly. Seriously, we had complete strangers complementing how well organized that sale was. It was really pretty amazing and made me a fair bit of money. Money used for moving expenses, and then lawyers fees, and then we stashed the rest away for the next inevitable crisis. Eventually CrowdRise kind of went defunct and became nonprofit only, and that account got closed. Over the last year or so, a few people have asked what happened to it because they had wanted to donate and were unable to. I could never quite bring myself to reopen that account because it was… You know, asking for help. It was something I always meant to do, and knew I probably would someday, I just needed to ask for help with it.

HAHAHAHA ASK FOR HELP. HOO-BOY.

Six days ago on Facebook, I made a post about these amazing mourning bracelets I found online. In the post I said that I was budgeting to hand these out at my funeral. And I am! Because they are amazing and important and you should totally check out that link. But in the comments for that post, along with many of my friends agreeing that the idea was amazing and awesome and worthy, a friend I’ve known forever mentioned again that I really ought to have some kind of fundraiser going. I’m budgeting for my own funeral, and they would like to help. Several friends chimed in to agree. My amazing friend Megan, who had taken over the account from Danielle when that relationship broke apart, hit me up to ask what I would like to do about it. She was happy to set a new one up for me, but she’s in Seattle and I’m in Portland and she would feel much better if the account were handled by someone locally. Which makes a lot of sense; I agreed with her that if some disaster were to befall me (like, as I explained to J later, my van breaking down and suddenly needing hundreds of dollars in repairs, for instance) I would need money right away and couldn’t necessarily wait for a bank transfer.

(In retrospect, I jinxed the fuck out of myself with that one, huh?)

We looked at local laws, and disability regulations, and Medi-Cal requirements and came to the conclusion there was really no reason for anyone to handle any aspect of the account but me. So, Sunday I went about resurrecting an old bank account that had sat idle since my mortgage payments. That took a lot of doing, as they’d put a hold on the account for lack of use, and apparently I had not changed my address with that bank and they have been happily charging me five dollars a month since April 2016 because my mailing address was wrong. Even though my account is paperless? And literally has always been? And they made no effort to call or email me to tell me they were charging me for having the wrong address for all the shit they’re not mailing me anyway? I’m in the middle of arguing with them about that one. Banks suck. Regardless, the account was now open and free to use, all I had to do was set up the actual Gofundme and post a link somewhere.

Yep. All I had to do.

So easy, right?

Just… Create the account. Post a link.

Ask for help.

And you know, that’s probably where it would still be sitting if my van hadn’t blown the fuck up. On my way home Monday night in the back of a medical transport unit, unaware if my van was going to require $200 or $2000 worth of repairs, or if it was repairable at all, I knew I had to set up the fund. That night. So I did. I created the fund, updated the link here on my blog, and then posted a link to it on my Facebook page with the words “Okay. It’s set up. Do whatever you like with this information. <3 I love you.”

Within one hour, I had three donations and 18 shares.

Within 24 hours, I was halfway to the arbitrary goal of $5000 I had set. I bumped it up to $7000. 24 hours later, I was halfway to that, too. Within an hour, I had my first donation containing triple digits. In three days, I was getting donations from complete strangers because my friends had shared the link. Yesterday, a very good friend I’ve made through a perfume decanting group of all things shared the link in that group, generating at least five donations just from that. Several friends with birthdays this month shared the link with their friends and family asking for donations on my behalf instead of birthday presents. (seriously you guys should have held out for a pony or something) Relatives of my friends who have heard my friends speak highly of me have donated. As it is right now, the generosity of my friends has netted me over $4000 and 450 shares.

In only five days.

This. This is where the exclamation points are about to happen. This is where the proof versus faith happened. I knew I would probably get some help once I was bold enough to ask for it. But this.

THIS.

THIS HAS BEEN SO OVERWHELMINGLY AMAZING!

HOW THE FUCK DID I GET SO LUCKY?!

WHAT! EVEN! IS! MY! LIFE!

OH MY GOD, EVERYONE.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I’m not the sort of person who happy cries much. In fact, every single time I have done, has been directly because of some show of grace and generosity and love related to this disease. The kindness and love of my friends has brought me such emotional satisfaction and security, the likes of which I never would have known had it not been for this stupid disease. My faith said that if my life should turn to shit, my friends would have my back. Circumstances have proven that faith accurate and just – time and time again. But this.

This!

This is been so much more than I ever could have anticipated in my most optimistic of dreams.

I could fill the rest of this blog for all time with just the phrase “THANK YOU!!!!!!!!!!!!!” over and over and over, and it would hardly be sufficient to express my gratitude. My love. My faith, absolutely justified. My awe at having so many amazing people in my life. My feeble attempts to somehow live up to all of the amazing and kind things people have said about me in their shared posts.

This is my blog, but tonight I lack proper words to put in it.

My life is so fucking magical.

Thank you.

Thank you all so much for your love, your generosity, your jokes, your grace, your friendship, your very existence in my orbit.

That’s it. I don’t have any clever way to wrap this up. I will now resist the temptation to copy paste “THANK YOU!!!!!!!!!!!!!” a million times.

I love you all so much.

Needing the Dark

February 5, 2019February 5, 2019 tragerstreit1 Comment

Today started early. I had a 9:45 AM appointment in Portland, and if you don’t think that’s early clearly you are not familiar with my 3 AM standard bedtime these days. I tried going to sleep at a sane hour, but my overly active brain had other ideas. In fact, my 4 AM conversation with body and brain almost resulted in its own blog post; I just knew that if I got up to write it I wouldn’t get any sleep at all. And I need sleep. I like sleep. Even before all this nonsense, it was my favorite hobby. ALS just gave my lazy ass an air of legitimacy.

I have recently made a crucial step and actually have started asking my friends for help. I know, I know! I was just as impressed as you are with myself. It was not at all an easy thing, as you can well imagine – especially if you know me. But I have doctors appointments to get to, and J is amazing but cannot be my sole source of transportation – particularly when I own the van and it doesn’t actually need to be him driving it. So I had put out an all call on my friends list for someone to come drive, and my friend Matt stepped up for today. Matt is also the storyteller for my Wednesday games, and as mentioned before is an all around good guy and excellent person to have in your corner. As we were driving to my appointment this morning, talking about video games and commercials and marketing and the abyssmal real estate market, the van’s brake warning light came on. It had done before, and usually came on and went off seemingly randomly, and we had previously resolved the problem by simply topping up the brake fluid. It it started doing this again recently, and despite repeated mental notes to ourselves, we had just failed to get more fluid in it yet. I wasn’t terribly worried. It didn’t seem like that big a deal.

…You can probably see where this post entry is going, yes?

By the time we were done with my appointments, and filled the gas tank, and got home, I’d forgotten all about it. That afternoon was my biweekly therapy appointment, which J was available to drive me for. As we were driving the 20 some odd miles to my therapist, the warning light came on and stayed on. And then, halfway there as we stopped on the freeway for a traffic snarl, there was a God awful smell of burning rubber and when we looked behind us, a bit of smoke. We weren’t entirely sure it was my van? But the presence of the smell and the light made us resolved to put more fluid in the van as soon as humanly possible. For some stupid reason we had taken the brake fluid out of my van and brought it into my apartment, so simply pulling over and adding more fluid wasn’t an option at the moment. Traffic started moving again, then came to a crawl again, and as J put the brakes on, more smoke. Something was obviously not right in a big way.

Fun fact! I have a debilitating phobia of breaking down on the freeway. When I was really little, our car broke down at night on the freeway and I remember vividly my father moving around outside the car trying to figure out what was wrong, while traffic screamed by us in the dark and I just knew in my little kid brain that any second now some car was going to hit him and splatter him up all across our vcar. I shook in terror waiting for my father to die. He did not, of course, but ever since then, any time there is a slight possibility of something going wrong with the vehicle I am in, it creates an instant panic attack. That’s the problem with phobias. There’sno reasoning with them.

Jay was talking, making plans of dropping me off for my appointment and then going to some auto parts place to get more brake fluid and I would make an appointment the next day to take the van in for proper repairs. I didn’t really hear him over the blood pounding in my ears, and my brain was already busy trying to figure out what to do when I vomited any second now. And then we got off the freeway, and I felt safer for a split second until Jay told me that the brakes weren’t responding properly. I just needed to get the van safely somewhere, and then…

… And then, what exactly?

My van is not exactly easily interchangeable with another vehicle. It is a proper medical device. Ever since I got the fucking thing I have been paranoid about getting into an accident because it is not going to be simple and easy to replace it. And if something should happen while I am away from home, I am completely screwed. Stranded. If I were in a manual wheelchair I can get into normal car, but the SS Opportunity weighs 400 pounds without me in it and is a God damn behemoth in her own right. I can’t just get another vehicle. I can’t just call a taxi for a ride home, anymore.

That uneasy feeling turned into outright fear when we parked in the lot of my therapist and the smoke just kept coming. I couldn’t see anything on fire outright, but something was smoking in the rear passenger wheel well and I literally did not know what to do about it. I texted my little brother – because let’s face it – that’s what I always do when I have a car problem because what the fuck even are cars they are magical beasts whose language I do not speak. Not only does my little brother speak cars, he is a professional tow truck driver so even in the worst situation he can bail me out. And has, in fact – when Jay got sideswiped by a probable drunk driver on Christmas in 2017 and the driver took off, it was Justin who went out to get him and help him figure out the next steps. When my brake error light initially came on, it was Justin who told me what to do about it. So when he didn’t immediately respond, and some minutes passed and smoke was still rising from somewhere in my van’s guts, and I wasn’t sure what we would do if we started seeing flames, I called him. He had been taking a nap and listened very patiently while his sister panicked at him over the phone about cars and smoke and I don’t know what to do. He told me to hang tight and he was on his way because he is my hero.

He was some minutes away, and so I went ahead and went inside and had my session with my therapist which was now all about my current crisis. J stayed outside to wait for Justin, and would come interrupt the session when my little brother got there. I wasn’t sure what I was going to do. I wasn’t sure what I even could do. Even if he could tow it somewhere, what the fuck was I going to do in my wheelchair and 20 miles from home? Again. You can’t exactly call a taxi.

After my 45 minute session, we went outside to find my little brother arrived in his giant tow truck, lights flashing, working on my van. Because again, hero. J came over and explained what had gone down so far, which is that Justin had pried the tire off the side of my van and had a look inside and formulated some theories. Apparently the brake line was leaking somewhere, as the inside of the tire was coated with fluid, and the passenger side rear brake had had to do all the work by itself and so had heated up red-hot and started smoking and had finally in the 34° weather cooled down to an oxidized white. He was going to tow the van to Les Schwab, and drop off the keys for them to take a look at in the morning, as they were closed by now. He offered to load me up in the van and transport me in it as he transported the van, but that was of course in his own words “illegal as fuck”. And you know, dangerous.

So we had a plan for the van, but I was still effectively stranded in Lake Oswego. My local public transportation service Tri-Met has a wheelchair transport service, but it’s the sort of thing where you have to get a special ID to qualify for it, and you schedule your pickups in advance and allow for a two hour window. The Lyft app on my phone has a wheelchair accessibility feature I had discovered some time ago, but I had literally no idea how that even worked. It was apparently time to find out. I requested a wheelchair lift, and the app cheerfully told me my ride would arrive in 45 minutes. After a moment it updated to 15 minutes. My ride was going to be courtesy of a local ambulance company, please look out for a white medical transport vehicle, license plate blah blahb blah. And just over 15 minutes later, fuck me if a wheelchair transport van didn’t pull up. It had totally worked.

We finalize things with my little brother to drop off my van, and for me to expect a call from the mechanic in the morning with an estimate before any work would be done. The wheelchair transport vehicle was a fucking sweet ride, the driver was completely awesome, and I found out that wheelchair accessible Lyft requests get priority even over his company’s scheduled patients because they are fully aware anyone desperate enough to need a wheelchair ride without a plan beforehand is obviously going through hella circumstances. And so I got a ride quickly, and my ride ended up costing me 10. Fucking. Dollars.

TEN.

Not only that, but my driver was an hourly medical transport driver and so I didn’t even have to tip him. I asked if I could, and he refused.

SOOOOOOOOO in review, my peesashit van broke down today, after standard business hours, in a very dramatic way. And yet, I have an amazing brother who was able to rescue the van and provide me with the next steps, and then I was able to get safely home for a very little amount of money. And I learned that Lyft access is absolutely a viable transport option now. I am home safe and warm with useful information and a solid plan. I have another appointment tomorrow which I’m going to have to cancel, and when I contacted my friend who had offered to drive me for that appointment and told her I needed to cancel and why, she told me her brother is an actual mechanic and as is actually not very far for me. So even after I get the brakes repaired, I have a plan to contact him and get my van checked over thoroughly to make sure I am not going to have any more nasty surprises coming up. Tonight things completely went to shit, and then the universe conspired perfectly to make things as best and as smoothly as possible. Everything could have been so much worse. I could have been completely stranded in Lake Oswego waiting hours and hours in near freezing temperature for a wheelchair transport taxi service to find time to come get me. I have a AAA account so I would have gotten the car towed regardless, but I literally would not have known where to take it. And we could have been waiting for hours for them to have the time to show up also. Instead my brother was there in minutes. With a plan. And a free tow.

Repeating in my head tonight is my favorite quote from painter Bob Ross, who explained light and shadow theory in painting with a profound slice of life advice.

You need the dark, in order to show the light.

My life is as bright as the fucking sun, and it is only these moments of absolute panic and misery that prove it to me. I am fortunate beyond compare. Even when things are chaos around me, the universe conspires to take care of me in a perfect way because of the people I am fortunate enough to be surrounded by. In my most dire circumstances, I am never alone and never without hope.

I see the light, because of the dark.

The Best Present

January 16, 2019 tragerstreit1 Comment

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

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

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

Satou-chan just sent me happy box.

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

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

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

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

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

Tainted

January 4, 2019January 4, 2019 tragerstreit4 Comments

J likes rabbits. A very specific rabbit aesthetic, mind you. Get those Hallmark Easter bunnies out of here. Victorian rabbit dolls, like The Velveteen Rabbit, Albrecht Dürer’s Hare wood cut. When I see these kinds of rabbits, I think of him. If it’s something online, I share it with him through Facebook or text message. When I see these kinds of rabbits, I think of him and smile.

My brother Gecko likes birds. When I see something funny related to birds, I think of him. I forward bird jokes, and bird memes. When I see something funny about birds, I think of Gecko. Birds make me happy, because they make him happy.

Danielle liked manatees. I mean – I imagine she still does. She likes them because they were chubby and round and adorable. When I see something about manatees, I think about Danielle. I can’t share those things with her though; she’s no longer in my life. When I see things I know she would enjoy, I am reminded of her absence, and it hurts a little even though I like that thing. I enjoy manatees a little more than I might have otherwise, because they made her happy and I loved seeing her happy. But now they also make me a little sad because they remind me of her, and she’s no longer around and seeing manatees makes me miss her.

Sometimes I wonder what associations people have with me, and what sort of currently happy things will become bittersweet once I’m dead. Marshmallow Peeps, I’m pretty sure. Stickers and things with googly eyes maybe. Mister Rogers. Probably all of the things that people currently forward to me on Facebook and email, silly little jokes and references that make them think of me and smile; and knowing I would enjoy them also, send them along.

Sometimes I think about the time that will come, when there will be that thing that reminds someone of me, and I won’t be here to forward that thing to. Some cool fact, or happy little thing that someone will want to share with me, but they can’t. Because I will be dead. When some currently goofy thing becomes bittersweet.

What happy things I am going to taint with my absence?

It’s a pretty fucked up legacy, ruining something quintessentially silly. To be able to fuck up stickers for somebody. Stickers, for fuck’s sake. Happy little adhesive pictures. Someday, someone is going to be at a craft store minding their own business, and their eyes will wander to a happy display of delightful little sticky images, and they’re going to get really sad. Because they know how much I love them. Loved. It’s a completely ridiculous thought. An adhesive cartoon octopus is going to have the power to make someone cry.

We don’t truly possess the power to control how we are remembered. We can only try to steer the shape that our selves create in someone’s memory. A vague outline, to be filled in with the colors of experiences and emotions and perceptions beyond our control. I hope to be remembered first and foremost as kind. Death positive. My almost unhealthy obsession for cats, Mr. Rogers, stickers, googly eyes, nature documentaries, Halloween, spiders, cartoons, marshmallow Peeps, swearing, Bob Ross, Skyrim, Pokemon Go, etc etc etc etc notwithstanding, I really hope kindness and death positivity are the first things people think of when they think of me. I’m okay with those two things being a little bittersweet. I’m comfortable with someone coming across an article about green burials and thinking how much I would’ve approved and appreciated it and getting a little bit sad that they can’t hit that forward button.

Those other things, though, are all really happy things and I hope my death doesn’t ruin them too much. At least, not for very long. Marshmallow peeps have no business being maudlin. Sometimes I almost regret liking shit that is so silly, so fervently, because the thought of an adorable cartoon bat making someone tear up a little is really fucking depressing. It instead would make me very happy to think that someday one of my friends is going to slap a sticker on their laptop and think fondly of me without sadness coming in and fucking it up. Because stickers are awesome.

Bonus points for googly eyes.

Accommodation

December 26, 2017 tragerstreit2 Comments

Fun fact: I AM A GIANT NERD.

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

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

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

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

Guys.

GUYS.

THEY BOUGHT ME A FUCKING RAMP.

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

For me.

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

Funny word, accommodate.

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

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

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

It makes it WORTH it.

Can-tastic!

July 31, 2017July 31, 2017 tragerstreit1 Comment

Ok, so this isn’t one of those “little things have big impacts” kind of stories, though it sort of is. It’s a “help from unexpected sources” story more than that. In a really stupid goofy way. Some background:

1) My friend Nathan bought me a subscription to LootCrate. I’ve raved about that before, but let me do it again. We weren’t ever really the best of friends or anything, just work friends, and we lost contact for a few years. Like ya do. When he found out about my diagnosis, he bought me this subscription so I could have something fun to look forward to every month. It was an unexpected surprise and I can’t even remotely convey how much joy this brings me, for a lot of reasons.

2) LootCrate is a collection of VERY geeky things, from all kinds of fandoms. I’ve gotten t-shirts from Teenage Mutant Ninja Turtles to Overwatch to James Bond and everything in between. It’s current pop culture and retro childhood stuff, and I’ve gotten a lot of really awesome swag, including stuff you literally can not get anywhere else. Tetris fridge magnets. A Tron pencil bag that glows in the dark. SO MANY TOYS. And awesome aforementioned t-shirts. Like, half of the t-shirts I wear are now LootCrate shirts.

So this month’s crate theme was “animation”. It included swag from a couple of things I’m not that into (it happens, but I ALWAYS find someone who really loves said fandom and is happy to take things off my hands), and drink koozies from the show Futurama. Full disclosure? I’ve always kinda hated drink koozies. They strike me as a bit white trashy and that’s not helped by them USUALLY being branded with some stupid or plain offensive not-really-a-joke. But I loved Futurama, and this was a fun thing, and I’m ALWAYS drinking soda (Sorry Kelly, I know I need to be drinking water but CHERRY COKE ZERO IS DELICIOUS), so I slid my can into one.

Oh my god guys.

THE CAN IS SO MUCH EASIER TO PICK UP.

I typically have to use two hands to pick up a full can of soda, and as I drink it, I press a dent into the can to help me grip it. Hang on..lemme take a picture.

Every can I drink from has that little divot for my thumb. heh. But with the drink koozie, I don’t need it! It’s squishy so I can get a good grip on the thing without leaving a little dent in. I bet Nathan never knew he was signing me on for handicap aids. But that’s what I got this month, and I never would have figured this out on my own.

So that’s a happy thing that happened.

Celebratory

April 6, 2017 tragerstreit4 Comments

In two days, I will be completely surrounded by my loved ones.

In what my favorite (non-related to me, ahem) child Emi has dubbed my “Awake Wake”, people from literally across the United States are gathering for a celebration. For me. I am throwing what I hope to be a grand party, to see all of my oldest and dearest friends and my newer beloveds, before this disease takes my ability to speak, to embrace them. To throw one grand shindig and see everyone I love. A funeral in which the deceased has not quite shuffled off this mortal coil.

I blatantly stole the idea from my friends Chad and Dawni. You should blatantly steal this idea too.

In four days, I turn 42.

Each birthday is precious, regardless of your circumstances. Each of mine is especially dear to me, because I don’t know how many more I’m going to be able to celebrate by eating delicious food with friends. Sushi becomes less special when the only way you can ingest it is through a tube, you know? Each day matters. I’ve been laid up with a mild to moderate ligament tear/sprain, and I feel the loss of each mobility day more keenly than I otherwise would. My days on my feet are already limited, and I feel them slipping away. Worst timing ever; my friends are already arriving, and I want to see them as much as possible, I want to show them around this amazing city I live in, want to tell them absolutely everything I never had the nerve to, before. I’ll be celebrating my birthday by going to Clinic, but hopefully that evening we’ll do something fun and delicious.

I’m excited to see everyone. Nervous, because for some of them it’s been just about 20 years. I’m the fattest I’ve ever been; under doctor’s orders, but still my vanity aches a little that after all this time, they’re seeing me like THIS. But it’s important to me that they see me like THIS, and not an emaciated meatbot, unable to do anything but meet their eyes and drool as they talk to me. For now, I can still exchange horrible jokes, still hug like a bear, still tell my friends how much I love them, how each of them shaped who I am. How I am so much better for knowing every single one of them.

Because I am, without doubt, better for knowing every. Single. One.

My life has been stupid charmed by the amount of amazing people in it. And I am grateful than when I said, I’m throwing a party – please come? They are coming. From far and wide. To say hello and goodbye and I love you and maybe play with some stickers and eat some cupcakes. Crying will come later, but for now there are memories to exchange and stories to tell and so much laughter.

I can’t wait.

Bruising for a Cruising

March 17, 2017March 17, 2017 tragerstreit1 Comment

Okay, I have to tell you about this stupid thing that happened, because then I can focus on the good parts, and also tell you something good that came of it all.

TL;DR: ALS RUINS EVERYTHING EXCEPT MAYBE DRAMATIC ENTRANCES.

So, I went on a cruise. I’d arbitrarily decided I wanted to do that, last year, as a bucket list thing. Cruises seemed cool, and at the time I was envisioning myself spending a week on the ocean, cruising to Alaska, taking the time to mentally collect myself and write all of my goodbye letters and look at the water. My friend Beth has been trying to get me to go on this one geeky cruise, but it was in Mexico and I’m not a tropical person. At all. And then, well, my hands stopped working so well, so it was less important that I have all the alone time, and then the geek cruise announced that Zoe Keating was going to be one of the performers and suddenly I am going on that fucking cruise, you’d better believe it.

It’s this one: https://jococruise.com/

One week of music and comedy and geekery. Puce, Lance, and Tam came with me, and we were gonna have a hell of a time and I was going to work up the nerve to say hello and thank you to Zoe Keating, and I was going to look at the water for hours and maybe have a cocktail and perhaps see a whale. And I did all those things and so so so many more. It was incredible.

…Except for this one thing.

From the start, I had concerns about accessibility. I can’t do without the walker, these days. I use a cane to get from the car to the grocery store where I can use a cart to lean on, or I’m using my walker. I wasn’t terribly concerned about the ship itself, though, I mean, these things are practically built for old people, right? I had a quick look at the cabin floor plan and realized with one week to go until the cruise that the bathroom was not even a little bit accessible. I sent a very apologetic and frantic email to the amazing planner people, who totally came through and switched me to an accessible cabin with grab bars and everything and it was all saved and glorious! (HOORAY FOR THO) ..Except for the shore excursions, I was still wary of them. Now, I realize fully well that the A in ADA is for Americans, and the rest of the world is not exactly accessible, which is why I’ve become reluctant to do a lot of traveling. But I completely intended to make do, so long as they could get me to shore, which they promised they could. And I tentatively believed them and didn’t worry about it at all until the day before the first one.

We were going to stop for the most of a day in Cabo. Unfortunately, there was a thing on the ship I wanted to do, right in the middle of the day, so we stopped by the front desk to ask how the disembarking would go down, to see if the hassle was going to be worth it for just a couple of hours. The town was too small to dock in, so they were offloading people by tender, which is a small boat, the woman with a delightful German accent explained. There wasn’t a rail, and there was a small gap between the ship and the tender that would wobble with the waves. Due to liability issues, they could not carry me in, but there were people on both sides to give me a hand. She assured me it would probably be fine. I had my doubts.

We skipped Cabo, and the event I wanted to go to was postponed til Friday, so I wound up spending the whole day on the ship, drinking fake mojitos and staring at the water and having a nap. SO HORRIBLE, YOU GUYS, SUCH MISERY WOW. CRUISES ARE THE WORST. The next day was Loreto, though, and not only a local food festival but an all night concert (Ted Leo will indeed rock your face off, so there was no way I was missing that). I vowed to get my ass ashore and do some sightseeing come Hell or high water – and yes the irony of that is not at all lost on me. The morning came, and so did my apprehension. Again, too small to dock so we were using tenders to get ashore. Lance went to the launch site to see how hard it would be to get me on the boat, and he assured me that it was a little gap, the water was calm, easy-peasy. They’d be there the whole time to help, and I knew they absolutely would. It wound up truly not being that difficult, even though I can’t step up a curb anymore, just a little gap and a lot of helping hands. HOORAY FOR THAT.

The ride to the port was nausea inducing, and the dock we wound up in was basically a narrow-ass pier maybe five feet wide, and then a steep as shit ramp to get up to the port. We had to step down from the tender using two wooden boxes made into stairs and yeah, you THINK you already know where this is going, but NO. I made it down the steps just fine with a lot of help from the crew and my friends, and walked across the narrow pier with no problems, and up the steep ramp without falling. You doubters. We made it to the city and looked around; it took forever for me because hey! No proper sidewalks and steep hills and cobblestone streets! Lance and Tam split off from Puce and I to do some shopping, while we looked at an ancient mission church and its museum of artifacts.

And then shit went sideways…literally. Without going into detail, I fell out of the walker and skinned the bejeesus out of my knees. As usual, the worst part was the strangers. It was right in the middle of the road, in front of a restaurant, so everybody and their mother pretended not to be watching but still managed to stare as we tried to get me up. A well meaning couple helped Puce out, and then overstayed their thanks by over-analyzing why I fell and how to prevent it from ever happening again while Puce and I both repeated YES THANK YOU and tried to move the fuck on with our lives. We limped to an ice cream shop, where I ate delicious ice cream from my childhood while trying to forget that it happened. Remarkably, my tights weren’t ruined, it turned out. Hooray! The day was not completely obliterated, but we agreed it should probably be a short day.

We did the food festival, delicious! and then stayed for the first act when the concert started. We decided to head back to the ship while there was still light to see. I was pretty wiped out by this point, but luckily there were taxis provided by the cruise organizers to get me back to the pier. And….again, I know what ADA stands for, but the van that showed up had a wheelchair symbol on it and yet was the most un-accessible van ever. He helpfully provided a little stepstool for me to get up into the seat with…which was a complete waste of effort because I don’t have the strength to lift my foot up that high to get ON the stool, much less step up with it into the the van. I managed, but it was not pretty and my tights were falling off by the time I was onboard. I discreetly hitched them back up when we got to the dock, I walked so, so carefully down that steep-ass ramp, navigated the narrow pier to the boat…

..and swore a lot because I’d completely forgotten about the fucking steps up to the boat.

Now, I can do a couple of steps if there is a sold handrail, because it’s basically using my arms to haul myself up. Without a hand rail, though, it’s fucking impossible. I quailed, but Puce assured me we would get this done. The diminutive crew took my walker on board, and then I slung my arm over Puce’s shoulder to try the steps. It failed instantly, and completely. I couldn’t help him get me up at all; I couldn’t lift my foot even, on to the first step. The crew tried to help, but they were small Asiatic men trying to assist a fat American giantess, and they were completely ineffective beside grabbing me under my arms and trying to put my feet on the stairs as though the only problem was getting my foot to touch the step. I asked to be allowed to sit for a moment, to catch my breath and rethink the problem. It took them all too much time to understand, this isn’t working, let me go.

I looked around, trying to think of a plan, and not allow myself to become a quivering, humiliated mass of tears. I noticed a line of people behind us and tried not to look at their faces. I noticed a cute girl with pink hair watching, similarly trying to think how to help. And then I noticed Anne Wheaton, one of the cruise’s celebrity guests. You probably would know her best as Wil Wheaton(the kid from Star Trek)’s wife, but she’s a geek in her own right and a fellow believer in the amazing power of googly eyes (for real though, google VandalEyes; the woman is one of my heroes) and was on the cruise doing a reading from her upcoming book. And she was watching me struggle with these ghetto-ass stairs on this unstable-ass boat and these little dudes hurting me while trying to help and I really, truly, just wanted to slip into the water and never come up. But that wasn’t an option.

I had just decided that the easiest thing would be to haul myself on to the boat and crawl over to the bench on my skinned knees like a fucking animal because surely my dignity could only suffer more if I managed to piss myself as well. That’s when the pink haired woman stood up and offered to help, assuring me that she was quite strong. I waved her off once, announcing that it was probably easier if I just crawled, but she repeated her claim of strength and voluntold another man to help her and Puce pick me up. I accepted with as much grace as I could pretend to have. Carrying 230 pounds of dead weight up what are effectively rickety fruit crates and on to a narrow moving boat is not an easy task. I think 8 people at one time were helping me, swiveling me successfully into a bench, and I tried to crawl inside my own skin as everyone else filed on board. Puce was amazingly supportive as always, and silently offered support while we rode back to the ship as I silently prayed for everyone to please forget this whole thing, and did my best to not completely lose my shit until I was alone. The pink haired cutie stayed behind to make sure I was able to get off the tender okay, and of course I could as there were no stairs involved. I thanked her a dozen times, we got back to our cabin, and I cried a lot.

I spent the rest of the cruise fervently pretending that the whole thing hadn’t happened. I had bruises under both my arms, my ego was shattered, but goddammit I had a good time for the rest of the trip pretending I hadn’t made a complete spectacle of myself in front of a boat full of strangers and Anne Wheaton. I mentally chalked it up as a lame-ass claim to fame and joked internally that she’d probably never forget the trip, for damn sure. And managed to forget it, mostly, specially when I got home. I knew I’d probably blog about it, but hopefully in a not-depressing way and try to find some positive angle on the whole ordeal, cause that’s how I fucking roll.

I’m off work for sabbatical now, so I slept late Monday. When I woke up, Puce asked me if I’d been on Facebook yet. That’s…never a good sign. I told him no, mentally wondering who died. He said I should check, and I got nervous and asked what was up. He asked if I wanted to find out myself, or should he tell me, and I didn’t feel like sorting through a time bomb of a timeline, and maybe Facebook’s stupid algorithms wouldn’t even decide to show me what he was talking about at all, anyway. I told him to tell me.

“So…………Will Wheaton’s wife posted to the JoCo Sea Monkey 2017 group about your…incident. It’s very nice, and sweet, and depressing…but she still posted about it, basically to give you support.”

FFFFFFFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUCCCCCCCCCCCCCCK.

“Then Beth went and tagged you in comments.”

FFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUU

OK. Breathe. It’s cool. No big deal. It’s cool. Public humiliation part two. OH MY GOD THIS IS NEVER GOING TO GO AWAY IS IT. I braced myself for the worst and checked the group. And the post was obvious.

“To the young Sea Monkey who was using a walker on the cruise-”

Wincing, I read her account of the incident, mortified that my emotions were so transparent and I was completely casting a shadow on what should have been an awesome night. I hate that my disease is depressing as hell to everyone around me. I try to keep my shit in check for this reason alone. “What I wanted to do was get up and come over to you to tell you not to feel stupid for your body failing you, but it’s not my place to tell you how to feel,” she wrote.

..Holy fuck, this woman gets it, I thought in surprise. Being told not to feel dumb or weak or sad is never helpful. It makes me angry, if anything. And she understood, and elected not to intrude on my struggle like some Feel Good Fairy Godmother with useless words of non-comfort. I wanted to hug her for that. She continued to tell me that she noticed that not one person behind us waiting to get on the boat was irritated or impatient, just standing by not knowing how to help. And..I was relieved. And instantly didn’t mind at all that she posted this story semi-publicly. Was grateful, even. Because of course my brain told me that everyone was watching, feeling sorry or being mad that I was Officially Ruining Everything. She understood how I felt enough to make a point to tell me this. Which was amazing. She gracefully relieved me of any obligation to respond or identify myself, and concluded:

“Just remember, you are not your body. You are an incredible human being facing a really shitty situation who chose to go on a cruise and live life to the fullest. You are an example of perseverance we should all be so lucky to witness.”

I’m…not entirely sure that’s so, of course. I’m just some dumb girl with a fucking ridiculous disease that ruins everything. I didn’t really decide to go despite my disease. Zoe was gonna be there and thus, so was I. The end. But Anne’s words were amazing and timely as shit and I felt immediately better about the whole thing, and I replied with a simple thanks on the post but sent her a more detailed reply in a Facebook message, including a request to pass my thanks to her pink-haired rescue goddess friend who was indeed super strong. She told me why it hit her so hard, and hoped I’d be back next year. I told her I’d like that, but maybe I’d skip the port of call next time (heh), and asked if I could use her words when I inevitably posted about this whole thing. She said okay and she’d be sure to pass on my regards.

And now I have. So, a super shitty thing happened, but as usual, there was a moment of grace in it that gives the incident some worth. I’m only sorry I didn’t get to hear this from her in person so I could hug her. And then show her the googly eyes on my JoCo badge.

Sometimes It Goes Right.

November 8, 2016 tragerstreitLeave a comment

I want to tell you a happy story, but it involves a little bit of angst, but first there is a happy thing, and it has a happy ending, okay?

OK. I thiiiiiink I’ve told you about this before, but shortly after I was diagnosed, my friend Nate gifted me with a subscription to Loot Crate. It’s a monthly subscription box full of geeky fun things, and it’s a delight to receive every month. I ADORE surprises in the mail, and it’s been a bright spot once a month, and Nate is an amazing person for doing this for me. I always love seeing what awesome things they’ve come up with. Sometimes it comes with a shirt, I once got a glow in the dark Tron pencil case (cough cough makeup bag), a plushie facehugger from Alien, a kickass bank in the shape of Hellboy’s fist, the list goes on.

There’s a point to this beside Nathan is OSSEM and I love geek things, I swear.

I was so enamored of the stuff, that when Loot Crate upped their game and offered a wearables-only subscription, I was all over it. A shirt and TWO! TWO PAIRS! of socks every month (OH MY GOD I LOVE SOME SOCKS YOU GUYS) (no really you have no idea) (seriously two drawers overflowing) and it was a done freaking deal. This month I got a pair of Nightmare Before Christmas socks (squee!), a pair of Walkign Dead socks with weapons screenprinted all over them (hee hee hee) and a baseball jersey style shirt emblazoned with the logo for Weland Yutani, the company from the Alien movies. It’s RAD.

I went to see Dylan Moran on Sunday – he’s an Irish comedian who’s been in a lot of things I love (Shaun of the Dead, Black Books), and I decided to wear the jersey. And here is where things get sad. Apparently I was having a really low mana day, I don’t know why, but when I let go of the walker to climb in to the car, I fell. Not a dramatic OHMYGODWEAREGOINGDOWN but just a ‘welp, gravity is a true theory and we all must obey’ kind of slide to the ground. The corner of the car door caught me under my arm and I grasped at it to avoid going down hard, and I heard this awful rip. It was almost comical for a minute; I knew I had to let go of the door, because I couldn’t recover from the fall, but I could hear the ripping get worse and I was inwardly cringing.

Puce was a freaking champion of champions, he was by my side in a flash and had lifted me to my feet before I quite knew what was happening. He hugged me tight and said it was okay, we were still going to go out and have the BEST NIGHT EVER, and helped me back into my apartment so I could change my shirt. I hadn’t even had the effing thing on for an HOUR. I did a pretty good job of not losing my shit. He said maybe Loot Crate would replace it. I said I hoped, but didn’t think so, because it’s not like it’s Loot Crate’s fault I have ALS and fell and ripped my shirt.

I sent them an email that night anyway. Maybe I could buy a new one? They sometimes sell their crates, later, but even though I didn’t need a whole new set, maybe they had a spare shirt I could pay for. It was worth a shot. I sent them this email and photo:

SUBJECT: A Tale of Woe-land Yutani

TL:DR at the bottom. <3 Ok so I had tickets tonight to see Dylan Moran (he's awesome, go see his show if you can), and busted out my brand new Weyland Yutani shirt for its inaugural outing. I headed out to the car, and..well ok, I have ALS (Lou Gehrig's Disease) and my legs don't work well anymore, and as I was getting in to the vehicle they said EFF YOU and I fell. I flailed around for something to catch myself on, and instead the car door caught the shirt as I went down and it ripped. Really badly. Luckily it kiiiinda slowed my fall so I wasn't hurt, yay~! But my brand new jersey I hadn't even had on for an HOUR is now ruined. TL:DR; is there a way I can buy a replacement JUST for the shirt and not have to hope you guys sell this crate later? Even if you can't, thanks for being awesome. -Vashti

The next day I got a reply:

Hi Vashti!

I’m sorry to hear of your woes! As a one-time courtesy for being a loyal Looter and providing a photo of not only the torn shirt but including your kitty as well, I will get a replacement out to you. Due to inventory changes at our warehouse, we ask that you allow up to 10 days for your replacement to ship. Once it has been processed, you will receive an email with new tracking information.

We would like to apologize again for the late delivery of this item. Thank you for your patience and understanding!
Thanks!

Keith ^_^ – Team Marvel
Loot Crate Help Center – https://lootcrate.zendesk.com/hc/en-us

LOOT CRATE IS AMAZING. Keith is amazing. I am not sure what Team Marvel is, but it would not surprise me if the Loot Crate offices are divided West-Side-Story-Style into Team Marvel and Team DC and instead of fighting in alleys they play with action figures and make “pchew pchew pchew” noises at each other over their cube walls (“Cyclops got you with his eye beam!” “NUH-UH, Wonder Woman deflects it with her bracers!” “Her bracers would not be able to deflect his eye beams unless they were made of ruby quartz!” “SHUT UP NO ONE EVEN LIKES CYCLOPS HE IS LAME.” “YOUR MOM is lame!” “Craig do we have to go to HR again?” “….No. But Batman would kick Cyclops’ ass any day. He is like the Aquaman of the X-Men.” “GODDAMMIT CRAIG THAT IS IT.”), and have heated arguments in IRC over who is better, Deadpool or Lobo.

……I digress. But! Thanks to Keith, and apparently to Parmesan being a butt and refusing to let me take a picture without him walking all over everything IN THE WORLD, I have a new shirt coming. SO that is excellent. ALS can’t ruin everything when there are awesome people in the world like Nathan and Keith. My world is an awesome place with fabulous people in it.

…Deadpool would totally kick Lobo’s ass, btw. This is a fact.

Quick – What’s the Best Thing You Ever Bought?

May 5, 2016 tragerstreitLeave a comment

That snazzy awesome dream car you always wanted?

The engagement ring for the girl of your dreams? (She said yes!)

Little Timmy’s life-saving surgery?

WRONG.

It’s this.

Not the bedding, obvs, I paid for that. THE BED. THIS IS MY NEW BED GUYS. You press buttons and it quietly goes “click” “vrrrr” and then it MOVES. I don’t have to make a nest out of pillows and blankets to sit up! It just DOES THIS THING. And then you lie in it and then it’s like the comfiest quicksand where you just kinda siiiiiiiiiiiink in and ahhhhhhhh.

And I can GET UP OUT OF THE THING.

FURTHERMORE, and most importantly, it is IANTO-APPROVED ™.

I suppose you want the deets (that is Street Talk for ‘details’ because I am hip and cool with the electric youths), wellllllll it is a Tempur-pedic Premier base (the part that goes clickvrr) and a Serta Prodigy Everfeel Plush Firm mattress (the part that goes siiiiiiiiink-ahhhhhhh). You guys saved a bundle on it from my Mad Hookups with Jen at Sleep Train (the kids still say Mad Hookups right? Or does that refer to the sexxings now? I get confused, slang changes so fast) and it is SURELY THE BEST THING YOU EVER BOUGHT.

For real yo.

Thank you. So very very very much.

It’s a little too high to sit on and get dressed, which was easily remedied by putting my old desk chair next to the bed which ALSO serves for allowing my geriatric cat to get up. Parked next to my milkcrate night stand, yeah it looks a little ghetto but I SWEAR I am getting some real furniture for there now that I know how tall the bed is. I spent all day in it yesterday, literally, except for going out to dinner with J while some kid outside the restaurant got arrested for public intoxication while his winner friends continued to drink and pretend not to know him. But other than that I was in that marvelous bed, working from home, cuddling with cats. The botox injections for the headaches are REALLY not working out, so I’ve had nasty headaches which are not allowing me to fully appreciate the massagey functions yet, but FULL REPORTS ON THAT WHEN THAT IS REMEDIED.

OK.

Thanks for the peaceful space to sleep, my ninjas. You’re awesome. Even more awesome than the bed IF THAT IS EVEN POSSIBLE.

Resting Easy

April 29, 2016 tragerstreitLeave a comment

It’s really hard to get out of bed.

To be sure, this has ALWAYS been true. I like sleep, more than I like anything else. I find it hard to convince myself to get out of bed even to do things I like to do, because bed is comfy and warm and there are cats there. Bed understands me.

But what I ACTUALLY mean is that it is now physically hard to get my ass out of bed. No leg strength to push out of bed with, nothing to grab on to and pull myself out, a 22 year old cat that absolutely INSISTS that he needs to be on me, on my chest specifically, pinning me down, and all this equals me flailing in the morning like a turned-over turtle to get myself upright. It’s not dignified, or pretty. Probably hilarious though, for the first couple of minutes until you realize why it’s hard and then you get sad and hate yourself a little for laughing at me, you unfeeling jerks. Erm. Sidetracked. I mean, getting out of bed is becoming a herculean physical challenge, when I already emotionally and mentally don’t wanna.

And this, my dear, wonderful people, is where you came in.

My main babe Danielle had set up a Crowdrise account for me. You might remember that; it’s over there on the right. It was set up to collect funds against helping me with affording things related to my disability and bucket list. And now the money, money that YOU have so amazingly, kindly donated, money that Danielle worked very hard to raise on my behalf, has gone to buy me the most amazing bed ever. One of those awesome Old People lifty-adjustey-even-has-a-massage-function beds. To top it all off, my friend Jenn happens to be a sales manager at Sleep Train and got me this amazing, jaw droppingly good deal on the whole thing. I don’t know how much this normally costs, but I know I’ve got this bed for a STEAL. It’s going to help me SO MUCH. And when getting out of bed on my own is no longer an option, it’s going to be a VERY nice place to hang out with my cats.

They deliver it Monday. I’m beyond excited.

And I am so, so, so grateful to all of you for making this possible for me. This is going to be such a great help. And every night, when I lower the head of the bed to sleep and turn on the massagey function, I will think of all of the people who loved me enough to make it happen, and I will dream the sweetest, most grateful dreams.

Thank you.

ALS:FTS Video Blog Update Thingy Number Three: Gizmos and Gratitude

September 9, 2015 tragerstreitLeave a comment

Seriously look at this thing and tell me it does NOT look like crystal gazey fake woo-woo pseudoscience:
http://www.cefaly.us/

Moved

June 30, 2015June 30, 2015 tragerstreitLeave a comment

Last Saturday, the hottest day of the year so far, I moved from the Zombie Tramp House to my 2 bedroom, 1 bath apartment. The Zombie Halfway House of Ill-Repute.*

I had a whole gaggle of people show up to help. I was as prepared (stuff-wise) as I could possibly be for the event, disease and time permitting. Though still not as prepared as I’d have liked, I’ll grant you. I have a personal pet peeve about showing up to help someone move and they’re not even ready to do this thing. Like…I’ve had to do dishes, then pack the dishes, then move the dishes. YOU KNOW THIS EVENT IS COMING UP. PUT YOUR SHIT IN BOXES. IT MAKES IT EASIER AND HELPS YOUR SHIT NOT TO GET BROKEN. Some last minute things and cleanup is inevitable, but OH MY GOD PEOPLE WHY IS YOUR CLOTHING NOT IN BOXES YET. I try really, really hard to not be that person. So not only was most of my stuff in boxes, it was pushed out in to the hallway when I could, to make maneuvering as quick as possible.

And it worked! The guys (and gal) had everything in the driveway and front room, ready to rock, by the time we got back with the truck. I had a lot of friends work hard in stupid heat, and I was done in record time. I got the truck at 10:30, it was back to the U-Haul before 3. One last round to get the cats and all my groceries, and then I was all moved! With an hour to spare to get ready to go see Eddie Izzard perform (PROTIP: GO SEE EDDIE IZZARD PERFORM. HE IS A MAGICAL HUMAN BEING MADE OF UNICORN RAINBOWS AND SARCASM).

And Sunday, I was alone in my new apartment.

…which was the problem.

I had been frantically preparing for this move for a few weeks. As much to not be that person, as to keep my brain busy. Don’t think about it. Don’t think about the house being sold. Don’t think of your dream home in someone else’s hands. Don’t think about this being the first major loss to ALS. Don’t think about the sheer magnitude of work that’s going to need doing to find the next place. Don’t think about THAT place as temporary, too. Don’t think about this being the last Saturday you will ever sleep in at the house you own. Don’t think about this being the last time you’ll have to clean your kitchen floor. Don’t think about this being the last shower in a house you own. Don’t think about it. Don’t think. Don’t.

Sunday, I crashed. Left to my own devices, and with sweltering heat besides, I slept a lot. I went out for brunch with a friend, with the intention of going out and running errands and buying things that I needed for the new space, but found myself falling asleep at the table when he went to the restroom. He brought me back to the apartment, and I slept some more. I moved some furniture around, hooked up my TV and made my bed, and slept.

I called off work Monday. “I wrecked myself,” I told my coworkers in an email, “clearly I should have chiggity-checked myself.” And then I slept. I woke around 11AM, answered an email from my realtor, rolled over, and slept. 4PM I woke, with the intention of putting my PC together, and stared at my desk for 10 minutes before just sort of…collapsing out of my chair in to a heap on the office floor and lying there for probably twenty minutes, just staring at the wall. I went back to bed. 7PM I woke up, used the bathroom, fed the cats, unpacked my socks and underwear, and went back to bed. I just had no power to do anything else.

I’m not stupid, I know what depression is. And this? This is it. After all of everything, and a REALLY shitty week last week, I finally crashed and depression grabbed me by the jugular and shook hard. And I bled out and slept.

It’s still there, very much, but I managed to get to work today and do some things. My body is so fucking TIRED but my mind is going a million miles a minute. The sale is not quite final, there’s last-minute fuckery going on. I’m not quite out of the house yet, there was still some storage stuff and a couple of fans and cleaning materials, and then I have to clean everything up to make it presentable to its new owners, just as I’d wanted it presented to me but got a filthy house full of broken and useless shit instead. So much unpacking to do before this apartment is even navigable, much less livable. And so much to do after that before it’s mine. I have medical forms to fill out and new bills to pay and addresses to change. This afternoon, sitting at my desk at work, I cried, overwhelmed at how much was left, how much I had to do, and wishing someone would just fucking DO it for me.

I got a voice mail from some inspection company to reschedule an inspection I didn’t even know was happening at my house. That I still own. They’re doing work on the Zombie House to prep it for the final sale, now, and apparently the buying broker doesn’t think it’s necessary to actually let the owner of the house know that strangers are going to be there, working. I chatted up Justin, the Wunderbruder, and asked him when he was free to help me clear out the rest of the stuff at my house, to make the last storage run. He said he’d already moved all the straggler stuff into the garage, and just needed to sweep it out.

I said he was amazing, and he said Nope. Just a crazy white guy.

I told him it sounded like he had it mostly sorted out, and asked if he needed me; he said, “My thought was to bring to your place what goes there, get the storage key and code, stop back by the old house and get the remaining stuff out of the garage.”

And just like that, my brother had already sorted my shit and had a plan and I didn’t have to do ANYTHING.

“That way,” he said, “you can focus your energy on your new place.”

And I fucking cried. Totally lost my shit at my desk in front of my Sea-Monkeys and everything. Because he was an answer to my desperate prayer. I didn’t have to do anything. I didn’t have to ask. And I can’t even tell you how much that allowed me to just…fucking…BREATHE. For a minute. For a couple of minutes.

He has my back. I never doubted this. All of my friends have my back. I have never doubted this either, though this weekend was serious and hardcore proof. But to have him here, to have him step up and just…fuck. Just. Fuck. Without even….fuck. I can’t even tell you. Grateful. SO fucking grateful. He quiets my brain and I know I’m taken care of. And every time I tell him he’s amazing, he says, “Nope.” But he lies. In my darkest moments, I know I can pull through this because of the love of the people surrounding me. I don’t know what I did to deserve this much light, and this much love, and just..fuck. Yeah. So much love. And gratitude. And just…fuck. All of it. Everything.

Sometimes angels are real. Even if they used to punch you in the head when you were kids.

*That’s from a Dresden Dolls lyric. I’m not that clever.

Controversy and Community

May 16, 2015 tragerstreitLeave a comment

I attended a symposium on ALS research today. As a result, my brain’s kinda full. Full of information, full of renewed energy to be a part of the solution, full of the obligatory introspection.

Oh, introspection. The knee-jerk “how does this all affect me” reaction to Serious Things.

So I apologize if this point is disjointed. My brain is random today and I’d really like to write up a full thing about the symposium and everything involved with it, I know that I probably won’t be arsed to do it. So instead, I’ma just barftype what’s on my mind. You’re warned. Two things come to mind, though, two main ideas that went through my brain repeatedly as I listened to three very, very smart people talk about advocacy, research, and a promising drug therapy, in their turns.

One? Thank god for science. Jeebus Christmastime flapjacks. The third speaker, specially, spoke about laboratory mice and their contributions, and the second spoke about stem cell therapy involving foetal spinal stem cells. Both highly controversial. Live animals, dead babies. Dead *potential* babies, I suppose, depending on your beliefs and politics. I don’t care to get into that. What I DO care about is how fucking USEFUL these research methods are, how sometimes really horrible things produce really amazing and life changing things, and how every day those decisions must be reevaluated. “Sacrifices must be made” is such simplistic bullshit, but I can not fathom how we’d get on without some of the amazing research and therapies and information that comes out of doing things not everyone agrees with.

I firmly believe that even the most staunch OMG DED BABIZ U MURDRER SINETISTS BASTURDS protester, if diagnosed with fast progressing ALS and told “there is promising research that may lead to a halt or reversal in your symptoms” will probably suddenly think that well, okay, maybe just ONE dead baby. That would be okay. One dozen babies in my spine to keep me walking and alive suddenly doesn’t seem so bad, I mean…Just as “NO YOU MUST LIVE WITH WHAT GOD GAVE TO YOU” might think differently about assisted dying. Until you are personally affected, until the decision could conceivably have some import to you personally, your opinion doesn’t carry much weight. You really, really don’t know, CAN’T know, what you really believe until it’s challenged and you face some really fucked up choices. While you’re safe from the consequences of that decision, you probably shouldn’t be allowed to make decisions for people who ARE affected. I’m looking at you, old white guys making reproductive rights decisions for women. And you, PETA person. If your kid had cancer, and I told you that 2000 mice have to die in order to give your kid a chance to live? I bet you’d be suddenly less enamored of mousey rights. Maybe skip the hypotheticals and ask people who actually DEAL with the consequence.

*stepping off the soap box*

Oh, idea one point five – saint preserve us from everyone who has “read an article”. Especially off of the internet. You guys pipe down, too. The three panelists do this for a living. They’ve probably read that article. There’s a reason it’s not called out in the slides.

Point two, and the main one, is amazement at the sense of community with ALS peeps. I have met, and kept in touch with, and care about, people I’d never in my life have met otherwise. I’m antisocial (despite what Danielle says (or at least highly socially avoidant)) and it was a bit weird to come to the symposium today and know some of the people there. Simply because we’ve been similarly touched by a disease. Nothing else in common. Just..yeah, I have this disease too, ain’t it shit? Diagnosis comes with an education, and ALS particularly comes with a community. People I see so infrequently, and yet we have something that connects us on a level that no one else could possibly share.

I learned today that a disease is considered “rare” if less than 200,000 Americans have it. The number thrown around for ALS is usually 30,000, but I also learned today that the ALS registry puts it at more like 12,000. That’s really not many. My employer has 17,000 employees in my area, for example. All Americans with ALS are outnumbered by people working in one metro area for one company. So when you find someone else in your area that even remotely understands, you take note of that person and make an effort to keep them around. There’s nothing like being able to share on a deep and intuitive level what you’re going through. Because even though other people might understand on a theoretical level, it’s a completely different thing to find someone that you can just make eye contact with and say, “Fucking ALS.” and they say “yeah.” and …yeah, to their very SOUL they know exactly what you mean. Because fucking ALS. And because you know how shitty it is, you feel similarly compelled to help someone else in the same position to make their situation suck less. So you stick together, and exchange ideas, and cry for each other, and celebrate the triumphs of perfect strangers with whom you only share one horrible, horrible affliction.

So I guess I have a better understanding of why Harry Potter/Supernatural crossover porn forums exist.

A is for Awareness

May 4, 2015 tragerstreitLeave a comment

May is ALS Awareness Month.

Last year? Boooyyyyy HOWDY was I aware of it. It struck me as poetic timing, the month after my diagnosis was Awareness Month. That’s when I really began to tell people about my own diagnosis, that’s when I made my universe aware that this was happening. I became an expert in describing what it was and why it was bad and why it was going to be okay, really.

It was a harried, confusing time for everyone, and a month of big decisions. I still hadn’t decided to sell my house yet, or wait until my symptoms made it necessary. I decided ultimately to move on the sale, thinking I’d rather have the ability to make the new house mine than stick it out. Which is good, because already it’s impossible to carry things up the stairs with both hands. I ask people to carry things for me, when they can. Even emptying the litter box and taking it downstairs is a trial. So I’m very glad I started when I did.

This May, I’m aware of ALS. I’m aware of the changes it’s made, both in my physical ability, the outlook on certain things, and the way people interact with me. I’m aware of the strength I’ve lost. I’m aware of the independence it’s taking away from me. I’m aware of the sudden burden of time, watching it slip away, wanting to do as much as I can with it while at the same time wanting to do nothing at all and just rest. I’m aware of my friends coming to terms with the disease for themselves, and either stepping up or stepping down. Both are fine. Everyone carries this weight separately, and I’m proud of people for realizing early that this is too much to carry – I’d very much rather them know this now, than force themselves to hold up until they break. And suddenly the support beam below me is gone. It’s better for both of us to realize this now. I’m aware of the amount of freakin’ PAPERWORK involved with dying. The diagnosis should really come with an administrative assistant. Danielle is helping and doing a fantastic job, but it’s not fair for her to have to deal with the bureaucracy AND the emotions.

I’m aware of changes. I’m aware that I don’t have as much time as I’d like to think. 10% of people with ALS live longer than 10 years, and I firmly believe that I will be among them, but I’m no longer so certain that I WANT to be around that long, depending on the decline.

I’m aware, and in awe, of the love and the support that came seemingly out of nowhere. I’ve never in my life been so inspired by the people around me, overwhelmed by the willingness to sacrifice for me, so many questioning voices: “How can I help?”. I’m aware of the amazing group of individuals surrounding me, each with their own talents and lives to live, but somehow willing to reach out and be part of my problem. Willingly burdening themselves with a battle they know is already lost, but wanting to make the loss a little easier.

I’m aware of how amazing my life really is. And I guess, in a fucked up way, I’m thankful for ALS showing me all of this. I’m aware of how bizarre that seems. I mean, I’d still be very very happy if it fucked off forever, but I guess if it’s gonna kill me, the least it could do was show me a little mercy and awesomeness. Most people don’t get to know how much people actually care for them, and what impact people have felt from their existence. I’ve been shown that, and told that. I’ve heard many of the lovely things people say at your funeral, while I’m still alive. And because of that, I’m very aware of the need to show people appreciation and love while you’re still around. How important it is to tell someone without prompt that you adore them and you’re glad they’re a part of your life.

I’m aware of how cheesy that sounds.

Don’t care.

Today, I’m aware that I am a different person than I was a year ago, and will continue to change, but I will cling desperately to my optimism and humor and spit in Death’s face. Well, more of a girlyfight slappy flailing, spitting is gross. Eventually I’ll welcome her, but for now, I’m aware of so much more life that needs to be lived and so many more words to write. I’m aware of how much left there is to live.

Thank you all for being a part of it. I love you. I hope you’re aware of that.

Assisting the Assistance

April 28, 2015 tragerstreit2 Comments

One of the most common questions I get asked is some variant of “what can I do for you?” or “how can I help?” or “what do you need?” It’s a common response to finding out someone is in distress, when the situation is too large to process at once. It’s a natural instinct, to want to exert some kind of control over a situation that makes you powerless. Okay, it sucks that you have a terminal disease, what tiny little piece can I work at to make it suck a little less? There must be SOMETHING. Anything.

You know the absolute best thing you can do, for anyone going through A Big Deal?

Take care of their caregiver.

The Big Deal sucks for the person who is center circle, no question. But it ALSO sucks for the people around them – as Dr. Doug McClure told me, “You’ll find it’s not that YOU have been diagnosed, WE have been diagnosed.” The caregiver is responsible for keeping everything together when the diagnosed no longer can. They do everything from making/getting to doctor visits to cleaning house to coordinating visits to making sure they’re wearing clean socks. Lifting spirits and lifting patients. Finding hope and finding the damn car keys.

Dying sucks, and there’s a lot of planning and work and Massive Introspective Soul Searching ™ involved, but comparatively? My job is easy. I just gotta die. Whether I work at it or not, the end for me is the same. I just have to let it happen. Danielle, though, she has to plan and prep and care and organize and clean and all the things I can’t, from here on out. It’s a really big deal in its own right. Later on in our joyful journey of doom, if I just let things happen without working at it, I’m pretty much where I was either way. If she lets things happen without working at it? I won’t eat. She worries about keeping my house clean, making sure I’m not expending too much energy, researches places to live, and is pretty much an unpaid personal assistant.

…The woman cleaned up cat poop this weekend to spare me having to spend a spoon to do so. CAT POOP. THAT IS LOVE, PEOPLE. She’s signed on to scoop cat boxes for NOT EVEN HER CAT.

It’s a tough job but it doesn’t have to be thankless. I’ve done thankless jobs, and they’re soul-draining. I’ve done really shitty jobs happily, because I was appreciated for it. It’s amazing how far a thank you goes. An honest, sincere word of thanks. A “hey, I know this thing took up all your weekends for a month and I’m sorry I can’t pay you for it, but let me take you to lunch at least”. Taking a second out of your life to say “I appreciate the hell out of what you’re doing.”

I’ve said it before: it is fucking AMAZING how helpful it is, to simply have someone just acknowledge what you’re doing is hard.

So if you want to do something for me? Do something for Danielle. Buy her a freakin’ Jamba Juice or something. Ask her how you can help share her burden. She needs people to care for her. Someone to give her a break sometimes. And mostly? People to recognize that what she is doing is HARD. She is shifting her entire life to be there for me. People need to appreciate and acknowledge that sacrifice. I appreciate the ever loving SHIT out of her, and it will be extremely helpful to me if others do, too.

Thank the Good LORD for great friends.

April 19, 2015April 19, 2015 tragerstreitLeave a comment

Not even an hour after I posted that last entry, and sat here, feeling very small and afraid and helpless, my little brother Eric sent me this:

And I went from crying with grief to crying in laughter.

And that’s how I know I have the best planets in my orbit.

ALS : FTS

Seriously, Fuck This Disease.

Tag: orbited by planets made of awesome