All is Well

June 8, 2015June 8, 2015 tragerstreitLeave a comment

I have things to report and ruminate on and whatnot, but it’s a lot, and I’m still processing. It was a very complicated weekend after a very emotional week (by which I mean panic attacks and crying and fighting and more ativan taken in three days than in the last three months). Things are okay. But they’re hitting hard and fast and yeah. I’ll tell you all about it, in a bit.

But for now? One of my fellow ALS peeps posted this to her Facebook page today and I love it, so I’m sharing it with you.

All is Well.

All is well.

Noise

June 3, 2015 tragerstreitLeave a comment

When I was younger and cooler and far more existentially miserable, I wore soft leather boots and flowing skirts and metal belts with chains and coins and bells that made a lot of noise. Not so many as my friend Bascha – you could hear her coming a mile away. But the chains around my waist and the handcuffs through the epaulets on my jacket and the many metal bracelets around my wrists and the key earring clanging against the rest of the rings told you I was around. I loved the weight around my hips like a hug, the bright glint of the lights catching everywhere. And when I danced, I’m sure they all made a wonderful clatter. I delighted in jogging down the stairs, listening to the pinging and the rattling sounds that I made.

Hi, I’m Strange, listen to my wonderful assortment of spanglery. I don’t actually want to be noticed, so much, I don’t want to have to interact with you, but I want you to be aware that I’m here, with my jangling cacophony of industrial noise. I had my own joyous soundtrack of chains and bits and keys and bells, shaking rhythmically to my own walk. I don’t march to a different beat, I am the drummer*.

I have a new soundtrack now, a more subtle one. I have new shoes and they make a lot of noise, because they’re not broken in yet. Creak-creak-creak of the fake leather. It goes with the skrtch skrtch scrtch of the Velcro on my braces. And the soft click, click, click of the cane. And the near constant ‘ahrm’ clearing of my throat due to whatever medication is causing that. It’s not such a joyful soundtrack, but it is my noise nonetheless. A song of medicine instead of industry.

Necessity drives this noise instead of a penchant for collecting shining metal bits, and the undertone is the same. I don’t want to be gawked at but I want you to be aware that I’m here, please don’t back in to me. This isn’t music I chose, but it’s not a bad one. I’m glad it’s not accentuated by the rustling of adult diapers or the scree scree scree of dragging an IV stand around. And not the vshhh vshhh vshh of assisted breathing. Not yet.

I am not so young. Not so cool. Not nearly so miserable, despite it all, and I wonder what my younger, noisier self would have thought about that. She’d be crushed we can’t dance anymore. She’d be confused why I’m so much more content than she is, all things considered. And I’d show her the support these medical noises bring, and the emotional support the medical need has brought, and I think she’d agree I have it better of the two of us.

It isn’t stopping me from thinking about buying a chain belt, though.

*All credit for that line goes to my dear friend Linnea, who uttered that bit of brilliance as we sat in my room as malcontented freaklet teens. I don’t think she ever knew how much that phrase inspired me and cemented my complete adoration of her.

Genetic Go Ahead

May 26, 2015 tragerstreitLeave a comment

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

They said yes!

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

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

I hope this diagnosis is good for SOMETHING.

Not dead yet

April 16, 2015 tragerstreitLeave a comment

There hasn’t been a post in a bit, I know. It’s not really because I don’t have anything to say. I have a lot to say about a lot of things. But not much of it is good. I’m just stalling.

I love you guys.

Anniversary

April 1, 2015April 1, 2015 tragerstreitLeave a comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Final Days in the Zombie Tramp House

March 20, 2015 tragerstreitLeave a comment

Things are coming together. I have a schedule. I should be able to put the house up on the market in about 2 weeks. I have nearly everything upstairs packed up that doesn’t need to go with me to the transition apartment. I have just the kitchen stuff to go through now, and squirrel away what I don’t need. From here, I’ll shift everything into the garage and eventually into storage, and then ‘stage’ my house as best as I can. Primarily this includes turning the ‘den’ back into a den and not an extension of my kitchen, the way it has been.

It’s been…an interesting exercise. To say the least. There’s the melancholy duty of going through my things with a very different moving mindset. You know, typically there’s the “have I used this in the last year? Do I really need this?” sorting, but mine’s had an additional “Am I ever going to use this again, and do I want to keep it anyway for sentimental purposes and have my family have to throw it away later?” There’s a fine walking line between “center circle, bitches! Keep ALL THE THINGS! It’s not my problem to deal with it later, I’ll be DEAD!” and “my death’s hard enough business for them, I should make it easier as much as I can”. I don’t want to sacrifice my current enjoyment of life in the interest of making things easier when I’m gone. But at the expense of a little time now, I can save grief later. It’s a hard business, going through someone’s things when they’re gone. So much crap, so many things important to me that are meaningless to anyone else. Do I let them go now? Or do I keep them, even though I know I’ll never look at them again and in all probability they’ll stay here in this box until someone throws them away.

There’s a sort of freedom that comes with this, too, a relief of obligation. I don’t have to hold on to this anymore. There’s no reason. I can give this up, it’s okay.

But the kitchen.

I had such plans, and dreams, and schemes. A professional workbench, a partitioned off section for chocolatiering, baker’s racks for projects..

and now I can’t. Because I know damned WELL I’m never going to be able to do that stuff. I can still bake, for now, and make candy, but nowhere near on the scale I wanted to. So in going through my kitchen gear, there’s the extra bitter edge to it. “Am I going to use this ever again?” “NO. Because I CAN’T. And that is SUPER SHITTY.” It’s the second major physical concession I’ve had to make, the first being the sale of the house in the first place. But I know there’s no point to outfitting my new kitchen like a professional workspace, because I’ll never be able to use it to its capacity. And that sucks.

BUT!

It also means I am no longer obligated to bring the cake.

“Oh we don’t need a Safeway cake or anything, Vashti can make one.”

“Um. I’m kinda busy that weekend, though. I’m not sure I’ll have the time.”

“Well, I guess we can just grab one from Costco.”

“FUCK THAT I WILL MAKE YOU A CAKE. Such a cake you will never have SEEN. Because FUCK Costco cake.”

It also means no more random experiments like the Meatcake, at least not as frequently as I did. That might be better for humanity. No one should wield that kind of power.

So this weekend I hope to finish packing up the kitchen unneededs. Over this coming week I’ll finish up my office and everything upstairs. Next weekend staging. And then…put the house on the market and see what happens. I don’t expect to have problems selling. Hopefully I won’t have problems finding a temporary apartment. Or a new home.

Right now, though, I’d like to find a nap.

Awww yeah, she’s a Sleep Machine!

March 17, 2015March 17, 2015 tragerstreitLeave a comment

So I got the CPAP machine yesterday! It’s pretty. It’s The AirSense 10 Autoset by ResMed. Or maybe the Elite. I don’t remember. It’s a lot smaller than I expected it to be. The sleep study put this expectation in my brain that it was going to be this massive machine next to my head, when it turned out to be the size of an alarm clock. With a hose.

That heats up!

My respiratory therapist (I have a respiratory therapist! I forget how many that makes in my Medical Posse) showed me how everything works, how to run the morning report, how to clean everything, how often to clean it, when to reorder supplies. And then I signed a contract that said yes I promise I will use this at least 21 days over the next 30 to show I’m SRS BZNS about CPAPpage. No, really, I had to do that. Or pay for the whole thing out of pocket ($1900!) after 30 days or return it to Providence. Weird. And then we fitted me for a mask, and I got one called “Wisp” because it was less strappy-constraint around my noggin. I’m at a relatively low pressure setting, I guess, which is good for beginners. Yay for me. The whole thing fits into a small case, like, I had school binders bigger than this thing, probably. I could put a vandalized Pee-Chee in here and feel nostalgic. But for now it’s just a softcover case, totally would fit in my backpack like it ain’t no thang when I travel.

The first night was challenging as I expected. I took an ambien to make sure I was able to sleep at all. It took a long time to stop feeling like I was suffocating and forcing myself to breathe out. The cats flipped out. I knew they would. When I laid down to sleep, Molly crawled up my torso like she was stalking a beast, pupils wide as saucers, jumping away when I touched her. Ianto was having NONE of that thank you very much, and slept in the hallway, and Parmesan, well. He’s 22 years old. He settled in next to my face as usual. And the awesome thing about the CPAP is that he was flopped over on my face and I could still breathe for a change! It was like…kitty scuba diving. With the only fishes being the ones on his breath. That I couldn’t smell. Because CPAP! It’s MAGIC!

I slept pretty hard, but I don’t know if that was CPAPpage or Ambien-ce. I took the mask off at like, 5:30, I think. I don’t remember. I remember being glad it has auto shutoff. My morning report said I used it for 7 hours and had an average of .4 ‘incidents’ an hour. Which I guess meant I stopped breathing? All of this will be sent to my doctor. By the built-in cell modem. Which I will be honest? Freaks me out a little. It’s like, Big Brother is Watching You Sleep. Fantastic if it helps, but it still feels like I’ve got a little snitch on my bedside. With a heated coil tube and a humidifier. Snitches…have switches?

I don’t even know where I was going with that.

ANYWAY. So I have this thing now, and it’s probably going to be part of my life from here out. Until it’s swapped out with a different breathing machine, I expect. It will eventually become routine to me. I can teach myself to get used to this.

Not sure about the cats, though.

Clearing Out

March 11, 2015 tragerstreitLeave a comment

We had a huge moving/charity thingy sale last weekend. We could NOT have asked for better weather for it. It was warm, sunny, and beautiful. In the course of our three day sale, I learned some things:

1. People like slowly driving by sales and magically determining that your sale has nothing to offer. And sometimes even if they stop, they don’t bother turning the car off.
2. People will haggle over a $1 item, even at a charity sale.
3. If I had a dollar for everyone who inquired if my ladder were for sale, I could have bought a new one.
4. Dude who offered me “like, around twenny bux” for a $300 collectible KNOWS about Masterworks Replicas, man. He KNOWS.

Also, I was shown, yet again, that I have an amazing support network. Folks I haven’t seen in person in years showed up. People I’ve only known online showed up. Friends donated things to the sale AND bought stuff. After three days, we were exhausted and done and a little bit richer and a lot lighter in stuff.

In between the chaos and crowds, I watched things that used to belong to me become someone else’s. And rather than melancholy, it made me happy. It made me happy to see my Wishbone plushie go to a girl who knew who he was. It made me happy to watch a kid’s face light up when his mom said, yes, he can have that. To watch a woman buy a set of manga – in Japanese! – that I was sure no one else would want. At the end of each day, I looked at the garage, less full, and looked at my friend Danielle, running the show and doing ALL THE THINGS, and was so, so grateful.

The sale was born of grief and hardship. It is to offset the upcoming cost of a horrible thing, and to lighten my load for the move(s) to come. It was hard – SO HARD – to go through my things and decide if didn’t need that thing anymore, with the added implication of, “I don’t want someone to have to deal with this when I die so I’ll get rid of it now.” And I gave up some of my treasures because I knew they were useless treasures to me anymore, and they might become someone else’s. A new life instead of shoved in a box until my brother goes through my stuff when I’m dead. And so I let things go.

And I watched the teenager walk away, hugging Wishbone, and was content with my choices.

Honk-shuuuuuuus

February 24, 2015 tragerstreitLeave a comment

Here’s something I CAN post about! The sleep study!

It went…yeah wow. OK. So in the morning, the nurse came in at 6:30, I was already sitting up and waiting for her to come in and turn on the lights. “Good morning!” I said.

She looked at me like I was a little crazy. “I dunno….is it? You had kiiiiiind of a rough night there.”

By which she meant I did not sleep at all.

I got there at 7 like I was told, and waited for the nurse to get herself settled and everything checked in, just chilled and read my book. She came in and hooked me up, and I noticed she did it differently than the previous time – there was no drawing all over my head with a blue wax crayon this time. We fitted me with a CPAP machine, and I was given time alone to adjust to breathing through two different kinds of masks to see which one was easier. I was pretty dang tired so we called it around 10, and I crawled into bed. We did the same equipment checks that made me feel just as ridiculous as before. You are lying there in the dark and you’re told to look up and down ten times. Now left to right. Now blink fast ten times. Now close your eyes, three deeeeeep breaths. Wiggle your left foot. Wiggle your right. (I sucked at those). Etc.

And then she bade me goodnight.

And then sleep completely failed to happen. The mask was not uncomfortable or anything, I just could not get to sleep and stay there. I woke up at one point with flutters – something I’ve had happen for years and years, it feels like a low current of electricity just under my skin next to my left shoulder blade. It’s not painful at all, just uncomfortable and they get worse the more I get frustrated because I can’t sleep. Usually I get up and take kava kava or something, but I didn’t have that option during the sleep study. I recognize them now as a weird sort of panic attack, but there was nothing I could do but just lay there, frustrated, not sleeping, until they went away. Which was….awhile. And then I woke up again later, just…awake. No reason. I think I slept like an hour and a half at a time. Twice.

She said to not get discouraged, people often have a rough time their first try, and it will be easier once I get it home. She tried turning up the machine, which made things worse, she said, and she has lots of notes for my doctor.

I’ll see the pulmonologist on the 23rd.

As always, I’ll keep you posted.

Beautiful Kitten Fish, Sleep Baby Sleep

February 12, 2015 tragerstreitLeave a comment

I have a very romantic weekend planned. While everyone is eating expensive dinners and watching 50 Shades of Sexual Assault this Valentine’s Day, I will be having my second sleep study. We’re going to try me on CPAP as I’ve said before, and it’s likely I’ll get one of my very own. It’s better than chocolates and roses any day!

…I should note that Valentine’s Day means nothing to me at all. Lest you think I’m actually bitter.

I will call the pulmonologist and make an appointment today, they’ll want to know the results of the study before we get started with equipment and everything. I’m hoping it all helps with the exhaustion and whatnot, I’ve been having a REALLY hard time waking up this last week or so. It might be the med change; we’ve upped the dose of Adderall from 10mg to 20. I don’t know that it’s doing a better job than the Nuvigil did, honestly. But we’ll see.

Sleep’s been kind of elusive these days, but that can be written ENTIRELY off to stress. I’m packing for real, now, and going through things to give up for the garage sale. It’s three times as difficult as it should be – I have to fight my inherent laziness, the high cost of physical exertion that ALS brings, and it’s just..SAD. It’s depressing as hell to go through my things with this air of finality. It’s moreso than the usual “Meh, I don’t need this” when you move, it’s “I will probably never have another use for this at ALL and I don’t want someone else to have to deal with it when I’m dead.” So it makes me tired and maudlin and my brain won’t stop even if I’m physically tired. I have a ton of people on standby who will help me pack if I ask, but they can’t go through my things for me. That’s my sad and lonely duty.

Also, I’ll be honest, the thing with the news article about my work and ALS has stressed me right the fuck out. And that conversation continues on my work’s internal news site.

Work stress, too, was about ALS recently.

Life seems entirely about the stupid disease lately, and it’s all stressful, and it’s really hard sometimes to not just curl up and sleep and avoid it all for awhile. I just don’t have the time to indulge in that. It hasn’t beaten me, not by a long shot, I still know everything’s going to be just FINE, goddammit, but it’s harder right now. It’ll calm down and be okay in a bit, but all I see for awhile is deadlines and packing and expenses and pressure. And while I’d like to just sidestep all that, and play Skyrim instead, I know I can’t, and it will be so much worse for me if I even try.

And so I will continue to work, and pack, and sort, and not sleep very well, and spend too long in the mornings lying in bed and snuzzling my cats instead of getting up and getting dressed for work. For now. For awhile. Not forever. There will eventually be an end to the work, and most of this stress, and I’ll be allowed to properly sleep.

Bloop bloop bloop bleep bleep.

Learning New Can’ts.

January 20, 2015 tragerstreitLeave a comment

Every day is a voyage of discovery.

I have recently discovered that I can no longer stand up from a seated position without either swinging my arms wildly in front of me for counterbalance, or using my hands to lift my butt off the seat and pitch forward. I have also discovered that I can’t go in to my backyard when it’s muddy anymore, not even to close the shed door because it’s raining hard and the floor inside is getting soaked, because I WILL fall in the mud and bend my umbrella and muddy the hell out of my hands and knees AND lose the freaking key for the shed lock somewhere in the grass. I have also discovered that I can’t step over the threshold of my house without pulling myself up on the door frame or something. Stairs are becoming akin to mountain climbing.

I’ve had two proper falls since the last Amtrak one. I fell on a wet inclined driveway with mulch while getting out of a car. That didn’t hurt too badly except for very nearly ripping my middle fingernail off. That really sucked. And then I had a fall in my driveway while carrying things inside the house. It was my own fault, I was carrying things with both hands and I have recently discovered that well, I should not be doing that. The fall wasn’t horrible, I didn’t break anything, just skinned the hell out of my elbow and landed on my foot wrong enough that my big toe was a solid bruise for a few days.

Lessons learned.

On the plus side? My arms are fucking BUFF now.

I had my follow up appointment with Doctor Goslin last Wednesday. We mostly talked about meds, new insurance, and stupid administrative crap. She checked my strength in my thighs and hands and arms and was satisfied with the rate of decline – there wasn’t any. My calves, though, are basically devoid of useful muscle now and my feet are done. When I don’t wear shoes in the house, my feet just drop on the floor with each step – I call it froggy feet. I don’t walk down the stairs so much as clomp.

The last time I saw her, she recommended a sleep study to see if maybe my exhaustion was in part because I don’t sleep well. The sleep study found mild sleep apnea – no surprise, it runs heavily in my family – but nothing to explain the lack of energy. I’ve got a follow up study on Valentines Day, how romantic! And I’ve been referred to a pulmonologist to see if they have any recommendations about that, but I’ll probably be getting a CPAP machine. It will help with keeping my lungs strong, if nothing else, she said. I can see that. I have no idea how the cats are going to handle it. It doesn’t make so much noise once it’s on your face, but still.

Today, we start the voyage of discovery that is med changes. I was out of Nuvigil about a week before I had my appointment with her, and OH MY GOD the difference. I went straight back to sleeping 18 hours on the weekends and nearly falling asleep at my desk all the time. I went home from work and crawled in to bed with my laptop and passed out at like 9, those nights. Because this is a new year, new insurance, she tried to prescribe me adderall again, and gave me samples of Nuvigil just in case.

Insurance denied the adderall. But not a blanket denial! Just..she had prescribed one to two a day, and they only covered one. It’s the second to lowest dose of it, and I was only ever going to take one anyway, but it took a couple of days to sort it out. And by couple of days, I mean I just got it yesterday. Today’s the first day, we’ll see what happens.

It’s a world of flux and change, even if I have the answers. I know I’m going to lose my ability to walk, but it’s a question of when, and discovering daily the new can’ts. I discovered that I can’t function without some sort of energy med. I don’t have an answer why not, yet, but it’s a new can’t.

But sometimes can’ts are not a bad thing. I can’t do this on my own, because I have people who love me and won’t LET me. I can’t stop moving forward, even through all of the can’ts, because I have so many people carrying me.

I can’t stop believing things are okay, because I know they will be. They’re gonna SUCK and be full of more can’ts than I could ever imagine, but somehow, it’ll be alright. Things will work out.

It can’t happen any other way.

Life, Death, Something in Between

December 26, 2014 tragerstreit1 Comment

Every city is a person. San Francisco, for example, is a cooler-than-you power player by day, club kid by night with a serious drug problem and crushingly low self esteem. He’s beautiful, but the kind of beautiful you regret finding in your bed in the morning when his makeup’s come off and you see what he really looks like. Sacramento is his younger sister who wants to be as cool as her older brother and tags along to his parties, but she really just doesn’t get it, and won’t, ever. She’s self important and destined to be either a politician or homeless, depending on whether she’s willing to sell out or not. Portland simultaneously hates himself and thinks he’s better than everyone else, writing mostly bad but occasionally amazing poetry, while drinking whisky flights and watching the rain mist over the concrete outside his rent-controlled studio apartment downtown. He’s beautiful, quirky, and surprisingly athletic, which is amazing considering you’re pretty sure he lives mostly on coffee.

New Orleans is a man who laughs too fast and too hard, talks too much and too long, drinks to work up the nerve to socialize and then keeps drinking until he’s sick, the sort of drunk who can turn on you without warning. He’s a fantastic pal to hang around the town with because he knows everyone and doesn’t mind introducing you, an amazing cook able to whip up the most amazing meals faster than you can blink, and overall will show you a damned good time as long as you’re buying. He’s got a timeless sort of tired beauty, the grace of a man who’s been through some really rough times, and the charm of a desperate charlatan in need of some quick cash. He spends way more than he earns in an effort to make himself seem far less tired and sad than he feels, and he dates twin sisters Life and Death. When Life has partied herself out and goes home in the morning, Death visits by day and they stroll among graveyards and quietly share memories of happier times.

He needs the love of both women to be allowed to be who he is.

New Orleans is a larger than life, boisterous, beautiful place. In some places, the beauty is plastic and painted on, but there nonetheless. In other places, it’s quiet and stately and dignified; beautiful if you notice it or not. Everywhere you look, death and life are married and inseparable. Among the touristy, horrible glitz of Bourbon Street, there’s a smell of sick and decay and deteriorating sidewalk rubble to trip you up at every turn. Among the quiet graveyards around City Park, plants grow between the cracks of the crypts, the living wander freely, and the whispering of traffic is never far off.

New Orleans remembers what it’s like to have a healthy relationship with death.

We visited a very beautiful paper and pen boutique in the French Quarter, called originally enough – Papier Plume – and spent a fair bit of time looking at the most elegant instruments for committing ink to paper. Beautiful glass fountain pens, calligraphy pens, ink of every shade, and journals of artisan paper for keeping track of your life in. Everything you need to spill your living thoughts on to dead trees. As a sort of team memento thing, we all three bought glass fountain pens. We spent more time deliberating on ink than we’d spent choosing the pens, and I’m grateful and surprised that the shopkeeps never got the least bit impatient with us. I found shades I loved, but was dismayed that they weren’t permanent ink – they would fade in light or run when wet. The shopwoman asked why I was so set on permanent ink.

Colin looked back at me for a moment unsure of how I wanted to proceed. I smiled gently. “I ..have a terminal disease,” I explained, “and I mean to use these to write my farewell letters.”

She was quick to recover, immediately understanding and warm. She expressed her condolences, particularly when I mentioned ALS specifically, as – with so many people I’m finding – someone she knew had been lost to it. We made our selections, and she sincerely wished me luck. I appreciated it, and told her so. New Orleans was such a wonderful melt of life and death, that it wasn’t awkward to have that conversation. I only mentally dwelled on it at all in order to marvel at how normal that exchange seemed, before putting it away in my memories.

Several times I felt like I ought to have been somehow overwhelmed by it all, achingly sad to know that it’s the last time I’ll be in that city, thinking on life, death, the afterlife while sitting in St. Louis Cathedral, waiting to be moved enough to weep, and never really feeling like I needed to do so. I felt very comfortable and at peace there. I did not need to mousecreep my way through social interactions, because death was a part of life there. No explanations, no apologies needed, just a warm bath of understanding at the very core of the city. Time enough to relax and revel in a healthy attitude towards death before returning to a world still terrified of it.

I could never live in New Orleans, but it was delightful to be in his company for awhile. I’m grateful for the chance I was provided. Seven days being allowed to be what I needed to be, with two amazing people who love me to the ends of the earth and with whom I feel safe enough to relax my constant need to assure everyone I’m okay, and admit when I’m overwhelmed and need to sit down a bit. Seven days to live and eat and breathe and sleep for a week in a city that made me feel welcome and …normal.. enough to drop my guard in public for a little bit and just be unapologetically weak and flawed and alive.

A chance to be a dying woman in a city perfectly okay with death.

“Privileges”

December 17, 2014December 17, 2014 tragerstreitLeave a comment

I joke a lot about “membership has its privileges” when I get some special attention over my disease. Closer parking spaces. People holding the door for you longer than they normally would. Things like that. I definitely notice I’m getting special treatment, the more debilitated I get, and “privileges” is becoming kind of a tired joke, but I’m learning daily how differently people get treated when they’re “less than perfect”.

I went through Security Theater this morning, to get on a plane to come to New Orleans for a vacation. (Hello from New Orleans!) Megan and Colin were my partners on this venture, and Colin did a fantastic job of running interference for me. We researched what was needed for someone to go through security with a cane and braces, and Colin was marvelous at stepping up and informing the various security peeps of what was expected.

Sidenote: Post 9/11, this was the most pleasant TSA experience I’ve had.

I didn’t have to remove my braces, they swapped my metal cane with a wooden one so I could walk through the metal detector, and then had me (try to) stand in the imaging machine – not backscatter, it turned out, some other technology. Megan’s going to research that. I wobbled. They patted me down a lot and swabbed my hands and shoes for explosives, and then a really nice TSA officer collected my things for me and led me to a chair to wait for the other two.

My cane and braces got us in the fast track through security. My cane and braces got us boarded first. Pre-boarding, bitches! My cane and braces get me more attention and consideration than I’ve ever had. It is just weird to me still, to be granted privilege and special status because my body is betraying me. “Here, you have less time, literally, than the rest of us. To the front of the line, please.” I’m grateful for the consideration, it sincerely does make my life easier. But it feels weird and alien still, because there’s that edge of “I don’t deserve special treatment” and “I don’t NEED special treatment” and on either side of that chasm is a yawning abyss of “Shut up, yes you do.”

I’m not sure what the point of this is. I guess part of me is a little appalled that it takes something like a terminal disease for people to notice and be nice to you. And I’m just as guilty of it. I’m far more likely to smile at a total stranger with some sort of affliction, like – hey, you’re okay, man, you’re cool. I’m on the other side of that now and… it’s not insulting at all, but it’s a little sad. Like, why wouldn’t you hold the doors for that dude but you’ll hold them for me?

And I joke about “membership has its privileges” but..really, it seems only fair that the universe dishes out SOME gentle allowances to soften the blows. Even if it’s only in letting me on the plane 20 minutes before everyone else. For every fall, there’s someone to help me back up. I’m happy to be in New Orleans on someone else’s dime, and I honestly couldn’t ask for two more considerate and compassionate travel companions who are on point and looking out for ways to make my life easier. (They were always there, though. ALS didn’t do SHIT for me on that front.) So I guess, if the universe is saying “Sorry bout your terminal disease, have everyone letting you on the plane first as a consolation” isn’t that bad. At least it comes with something. And I am grateful for those little mercies. They really do soften the blows, and make things just a bit easier.

I’m privileged to have those small mercies.

Thrown Off, and Thankful

December 2, 2014 tragerstreit1 Comment

I don’t say this nearly enough. I am grateful. SO SO SO (imagine about a hundred more SOs here) GRATEFUL for the people in my life that have stepped up to show their love, to see how they could help, to not bother asking how but just doing something.

I’m going to New Orleans this month, for a week, on Megan’s dime. Because she loves me and wants to travel with me and I love that city. We’re going to eat ALL the things. I’m going to Disney World next year, which Danielle and I had been planning for our 40th birthday celebration for awhile, but Danielle has just taken the reins of this thing, asked me what I wanted to do, and planned everything out. She’s even fundraising so that I don’t have to pay for all of it. My dear friend Melody came to visit for a week, all the way from New Hampshire. Just to spend time with me. The lovely Linnea, my first best friend/partner in crime, is coming this weekend.

Dying makes you pretty popular, it seems.

And I always thought of myself as not that special, I mean – sure, nice person, okay, but extraordinary? Hardly. And here are all these people taking me places and coming from far to spend time with me, telling me without words that I AM kind of awesome, shut up.

It’s amazing, and overwhelming, and yeah. I’ve probably said it all a hundred times, and I’ll say it a hundred more. I love everyone in my life. I love the people who have made an effort to visit, I love the people who couldn’t quite get it together to do so, but wanted to. I love the people taking me to real places, I love the people who have gone to imaginary places with me.

This isn’t an easy journey for you guys. I know damned well. It’s easier to ignore me and hope I’ll quietly go away (SPOILER: I am going, but sure as SHIT not quietly). It’s hard to have the conversations with me, it’s hard to hear the jokes. It’s hard to know someone who is dying, and not let that depress the shit out of you or chase you away. Some of you will drop off the line when things get really horrible, and that’s okay. I’m grateful you are staying for as long as you can. Because I know that it’s hard. It’s one thing to say, “I have a friend dying of ALS” in conversation, and it’s another to admit to yourself in the small hours of the night that someone you know is going away and there’s nothing you can do about it.

You’re so incredibly strong for dealing with this. For doling out what kindnesses you can. I did not expect you to, and I’m grateful you stayed. You’re amazing people. Each one of you.

So thank you. For being a point of light, for being a celestial body in my universe. The cosmos is infinitely brighter with you in it.

Special offers for a limited time only

November 15, 2014November 15, 2014 tragerstreitLeave a comment

I’m taking Amtrak to see my friends Megan and Colin for the weekend. It’s a really nice, leisurely ride through some beautiful scenery, you don’t even notice the three hours gone by. I’ve taken this ride a few times, loved it each instance. SO SO SO much better than a bus. My Greyhound days are behind me, that was enough weirdness tto cover the rest of my lifetime. I don’t know WHAT it is with me and public transportation, why I attract the strangeness. Luckily Amtrak is immune to that. Yay!

I got a little preferential treatment..or different treatment this time. It’s been awhile since I’ve been on Amtrak, this is the first time since the diagnosis. I was asked if I needed help out to the car; I said I did not, I walk with a cane, but I’m still walking, you know? I was hoping he’d put me in a single seat, because that’s easier to get out of, but that’s alright. I’m not yet so far declined that I need that, just..it’s nice to have.

While I waited, I sat beside this lovely woman. She asked if she could sit beside me, and I told her of course. She explained she has Parkinsons, and that her disease makes her tire easily. I told her I know something about that and smiled; she did not recognize “ALS” but she knew “Lou Gehrig’s”. She said she was really sorry, I was so young, and that…was pretty much it, which is awesome. No dwelling, just acknowledge and move on. I don’t at ALL mind questions about it – please ask me ANYTHING! – but the conversation tends to get dark when they dwell on it. There’s a difference between curiosity and just..awkward. Instead, we talked about nail polishes and kids and traveling, and how stupid it was that everyone was lining up to get on the train when we had assigned seats.

“I’m waiting right here,” she told me firmly.

“I’m with you,” I grinned.

When we headed out, we got a club car ride to our cars. OH MY GOD so awesome. Seriously if you have to have a disease, it should have some perks, and apparently club car rides to your train car are part of that. Front door service, man.

I did, however, have a HELL of a time getting on the stupid train. The steps are steep, and I basically had to grab the hand rails and haul myself up. It was…not easy. For a second I wondered if I was going to be able to pull it off, but I did. The club car driver was careful to wait and make sure I got on okay before he drove off with the other woman.. I won’t be able to do this much longer. Mark one more thing I am losing.

But fuck it! I can do it for now. So for now it’s fine. I’ll take it. The lady and I wished each other a happy life.

The point of the trip is to put together a cookbook of my pastry recipes while I’m still able to use my hands. I think it’s a great idea, I’d really like to document my stuff, and I have a lot of fun writing the recipes out, so why not. Colin and Megan will take pictures and typeset the thing, we’l all bake delicious things and eat until we’re fat and sassy.

It’s been a really strange shift in mindset – “while I am still able”. It’s hard to think of things in those terms, and I have a really strong sense of pressure to do as much as I can, while I can. I am though, inherently lazy and I just don’t wanna. So it’s a constant fight between “do this because you won’t be able to later” and “hey let’s curl up in bed with the cats and watch How It’s Made all night”. There’s a balance there, I haven’t found it yet. It’s the same fight with “I want to fit into my clothes” and “EAT ALL THE THINGS! FUCK IT! I’M DYING!”

Just like the balance that the universe seems to be deciding on for me, between being helped and what ALS is taking from me. So far, ALS is winning, and it will continue to, but that’s alright. The universe is mostly balancing it out by showing me just how much people are willing to help me when I need it. And even when I don’t. I don’t have to ask – folks just show up and ask me to let them help. It’s overwhelming and awesome and I’m sorry it took a terminal disease to show me how many amazing people I have in my orbit. I’m still learning that whole “let people help” part, that’s hard.

So uh, this post really has no point. Like most of them. Just, hi. This is what’s going on. And I kind of wanted to get something else up here to move away from the talks about assisted suicide because MAN that was hard to write and I know it was really hard for you guys to read.

But again. You guys overwhelmingly showed me support in my decisions and thought processes. Even those of you who disagree with Death with Dignity, still voiced support in whatever I chose to do. I love you. I literally could not face this without support from you all, and I am incredibly grateful. I’m grateful to the conductor who asked if I needed help getting on the train, I’m grateful to the club car driver who saw the cane and offered me a ride, I’m grateful to the lady with Parkinson’s for keeping me company for a little while.

I appreciate the special offers, even if I’m able to take advantage of them for a limited time only.

I’m still alive

October 24, 2014 tragerstreitLeave a comment

I’m doing science and I’m still alive!

I am still doin stuff, and I have things to tell you, but a total lack of the time to write it up. Man. Life is crazy but it’s good that I have the energy to keep up with it still. I still need to tell you about the lawyer, and other things.

This weekend, my bestest and mainest of babes is throwing a huge-ass garage sale to fund my crowdrise campaign. She’s been working incredibly hard on it and I can’t even tell you how much I love her.

I hope you guys are doing well. <3

ALS : FTS

Seriously, Fuck This Disease.

Category: Checking In