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.

He, She, Me.

April 17, 2015 tragerstreit4 Comments

He:

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

…and I worried.

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

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

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

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

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

It’s the only thing within my power.

She

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

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

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

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

Me:

I’m losing strength in my hands.

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

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

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

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

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

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

And it scares the motherfucking SHIT out of me.

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

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

And I’m really, really scared.

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.

Vocabulary

April 3, 2015December 1, 2018 tragerstreitLeave a comment

In addition to changes to my lifestyle, I’ve made changes to my vocabulary. I thought maybe you would like to know these words, too, because they’re verbal shortcuts, easy ways to explain something, so long as the person you’re dealing with knows these words, too. So! Some of these are specific to me, and I realize that people reading this might not understand. Then there are some that are REALLY useful in dealing with terminal diseases, and the people who have them. It includes reading other pages. That’s right, I just gave you homework. Deal with it. *sunglasses descend*

MY WORDZ, LET ME SHOW YOU IT:

Godzilla Disorder/Disease
This is how my friends and I refer to ALS. It got that name before I knew what it was, it was just a better phrase than “whatever the hell is wrong with me”. My main babe Danielle came up with it, as I was trying to figure out what to tell people when they asked why I was limping. “Just tell them you got attacked by Godzilla. In the legs.”

Get-Ups
These are different than spoons (definition of that to come). There is a specific number of times I can get up, out of a chair, out of a car, off the floor. Once I’m upright, it’s fine, but the effort of getting up takes more out of me than a lot of other activities. It’s like…it takes more gas to stop and start a car at a stop light than to leave it idling. Same principle. Once I’m standing, it’s fine, but there are only so many times a day I can get my ass vertical.

General Vocabulary, reporting for duty, SIR!

Silk Circle
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
If you only read one thing from this list, it needs to be this. This is how to behave when someone is having a hard time. This is how trauma works. Comfort in, dump out. THIS IS IMPORTANT. There is no better way to put this, and no better way to behave.

Spoons

The Spoon Theory written by Christine Miserandino

This is basically the idea that a terminally ill, or chronically ill, person has a very specific allotment of daily energy units. Mana, if you like (you nerd). You spend these points throughout your day, and when they’re gone, that’s it. Game over. You think “Going to work” is one unit. But no. Every little thing that you don’t even think about (getting out of bed, brushing your teeth, put your clothes on) takes one point. It’s good language to check in. “How are your spoons?” “I’m kinda running on a spoon deficit today, sorry, I can’t go.” “Are you gonna have enough spoons to do all that?”

Also? she totally stole a spoon from that cafe.

Holding Space

What it means to “hold space” for people, plus eight tips on how to do it well

This is a relatively new one for me. I haven’t talked about it here before. This is the idea that sometimes, the absolute best thing you can do for someone, and usually the HARDEST thing to do, is hold space for someone. Just stand by, and be available if they need you. Don’t interfere or get involved if they don’t want you to. Just be on standby for when they do. It’s really hard to stand by and be non judgmental and simply offer support; but I want you to know that it’s the absolute best thing you can EVER do for anyone having a hard time. Just, say you’re there to help, and then back off. Hold space for me. And I’ll hold space for you. I can’t promise I’ll be perfect at it, I’m still learning. But I’ll do my level best.

There are certain to be words to come. There are always new things. New swear words, if nothing else.

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.

Chemical Defendants, See.

March 26, 2015March 26, 2015 tragerstreitLeave a comment

I imagine a lot of people out there share my weekly regime of tipping pills from many bottles into little plastic containers that mark the days by day and night. Times were, I took nothing (though my recurrent anemia said I really ought to be taking iron, and my living in Oregon says some vitamin D would be good). Occasionally I’d get a wild hair and buy some supplements and taking them maybe a week or two before I tired of it. I don’t have the luxury of tiring of it and setting the pills aside anymore, so once a week, I pull many bottles off of the apothecary shelves, and count them out into little daily pods.

9 in the morning. Gabapentin (twitches/cramps), riluzole (the only ALS drug), buproprion (for depression), armodafinil (for energy), citalopram (for anxiety), ranitidine (for heartburn caused by these pills), vitamin D (for missed sunshine), coconut oil (because maybe it helps, studies are out). Usually magnesium (for muscles and nerves), but I’m out of it just now.

At 2PM, another gabapentin.

When I get home, another riluzole and buproprion. Also vitamin C, iron, and a multivitamin (because you know why). Yes that is a children’s chewable. Deal with it.

At 10PM, another gabapentin.

5 of these are to deal with effects of ALS. One is to counter the effects of the drugs I take to deal with the effects of ALS. And then supplements, because my body needs all the help it can get. So many pills, and I have never calculated how much this costs me per day. Maybe I ought to. I’d probably be afraid. And then there’s the three optionals I have; cyclobenzaprine (for really bad headaches and stress tightness), lorazepam (for when I start to freak out), and zolpidem tartrate (for when I can’t sleep). I don’t take those very often. The cyclobenzaprine (flexeril) is an emergency maneuver – I’m prone to headaches and this is for when they last for days and for fucks’ sake I just want to relax and sleep. The lorazepam (ativan) is usually taken as a preventative when I am going in to a stressful situation (why hello, legal paperwork regarding my death) or when I have panic attacks. And I’ve had the zolpidem tartrate (ambien) on prescription for ages because I sleep for SHIT. But I rarely ever take it, one bottle of 30 of them lasted me nearly 6 months. They’re also an emergency maneuver (hello, trying to fall asleep with CPAP for the first time), reactionary rather than preventative.

And there is another one out there. A possible addition to my chemical combination.

It’s called GM604. There has been a very limited trial, it’s still crazy early, but they’ve shown it to slow the progression of the disease, and even one specific trial showed a minor return of ability. As you might expect, there are a lot of people trying to get it fast-tracked through FDA approval. There’s a petition here, and a Google Group here. The company producing it is called Genervon, which sounds like something Transformers use to make new Transformers. They’ve been keeping the world aware of their progress through press releases.

At the moment, Genervon is awaiting a decision from the FDA. If they’re approved, GM604 will be available and covered by insurance. If they’re not, they must continue through Phase 3 trials, which even at an accelerated rate that the FDA has promised will still take 3 years. Which means most of the people alive with ALS today will not live to see it. There really hasn’t been enough evidence, though, that it works. There’s enough evidence to prove that they should keep studying it, and have further trials, definitely. But not enough to prove it works.

The MS/ALS news magazine, the ALS Therapy Development Institute, and The Robert Packard Center for ALS Research at Johns Hopkins (yeah I totally cut and pasted that from the website) and many many others are watching this with cautious optimism, but not committing to either endorsing or condemning the drug. They want more trials to make certain it’s safe.

“Wait and see.”

“But we QUITE LITERALLY DO NOT HAVE THE TIME TO WAIT,” says just about everyone with ALS or caretaking someone or in the Silk Circle somehow. “GIVE US THE DRUG.”

“We don’t have enough tests to prove it’s safe,” says the FDA.

“What’s it gonna do,” ALS peeps say, “kill us!?”

And so the world waits. Maybe this is a miracle drug. It’s certainly not a cure, but it may be a substantial step.

Next stop: someone stealing the formula from Genervon and producing it in Mexico. Cue many, many ALS peeps taking vacations in Mexico. Because they just want to live awhile longer and will risk anything to get it. Their life is literally on the line.

I don’t know how I feel about it either way, to be honest. My progression might be slow enough that I’ll live to see the results of that trial. But I also fully identify with wanting to take a chance, if it means more time. More ability. More quality of shortened life. I’ve already said I would participate in trials, and I meant it. If I can create clinical data for this drug by taking it and checking in with doctors, sign me up. If it kills me faster, well, now you have a data point. And if it doesn’t, you also have a data point. From a medical trial standpoint, you win either way. From my standpoint, I might come out better than I went in. Or I might die, which I was going to do anyway. I definitely want to see more testing. Either controlled by the FDA or released into the wild and see what happens.

I’m excited that there is SOMETHING happening, in any case. Even if it’s potentially one more pill in my cases.

Bad Days

March 23, 2015March 23, 2015 tragerstreitLeave a comment

I’m having a bad day.

Some days are fine, some days are normal, and some days it all just fucking gets to me.

I found out today that a dear friend has stage 4 cancer and was given 4 – 8 weeks. Maybe 9 months with chemo. And he and his wife are wonderful, amazing people and they don’t deserve this at all and just, just..

FUCK.

And I offered what assistance I can offer, what I’ve learned about the bureaucracy of dying, and just..fuck, man. It’s been weird and wonderful to watch the sudden outpouring of love on them, see the support network spring up ‘out of nowhere’ that I knew was there all along because I’m on the outside of this. Aching because I know the inside and it’s super shitty and they don’t deserve this. Angry, so fucking ANGRY that this is happening and I am powerless to stop it. And I know that panic, and that scramble, and that wait wait wait while you know time is ticking. I didn’t deserve this. They definitely do not deserve this.

No one does. No one ever deserves to be told they’ll be dead in a year. Or soon. The roadmap to life is complicated and strange, and it’s unexpectedly horrifying to see the end of that journey, and count the mile markers on that road. And sometimes you ride in the car and the scenery is pretty and you space out and things are okay. And sometimes, like today, there are potholes and horrific accidents and you just want to pull the fuck over and breathe for a minute, but you can’t. The car keeps driving. Time keeps ticking.

And so sometimes, like today, you lock yourself in the bathroom at work and cry for a little bit. About your friends, but about you, too. About everything. And then on the way home, you buy all of the junk food and sit in front of your computer and eat everything bad for you and play Skyrim and try to tune it out for awhile. Tomorrow will be better. But today is a bad day.

I think bad days are an evil gift, because they give you permission to fall apart for a while. It’s like a valve release, or some days like a punctured balloon. Permission, a reason, an excuse to just completely lose your shit and release all of the FUCK THIS SHIT IT SUCKS SO BAD FUCK EVERYTHING WHY THE FUCK IS IT HAPPENING THIS IS SO FUCKING UNFAIR and embrace the grief and face it down and acknowledge it, and then put your big girl panties back on and live your life. Tomorrow. Until the next time. And the bad days are cathartic and good, and yeah. Necessary, maybe. But it sucks to be having one, feeling like you’re in a nightmare and it’s going to get so much worse. Knowing I’ll feel better tomorrow does not help me tonight, as I eat birthday cake Oreos and cry in my now-practically empty office in a house I don’t get to stay in while my digital persona steals from random barrels and kills skeevers and dragons. Pretending that the world can stop for a bit, committing yourself to losing a night to escapism because it was a bad day. As though it somehow makes up for it when all it does is cost me more precious time.

Just..bad day. Tomorrow will resume my usual dealing-with-grace and optimism and humor. But tonight it all just sucks so much ass. And while it’s okay, normal, expected to have days like this, it feels unnatural and awful and I don’t like BEING sad and angry and pessimistic. It’s not me. I hate this. I hate being emo, I hate that people I love are going through trauma, I hate that I don’t always have the strength and grace to smile. I hate that I can’t always find humor in the dark. Especially when it’s darkness around people I love. I hate this.

I hate bad days.

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.

“It’s a beastly, undignified business.”

March 13, 2015 tragerstreitLeave a comment

Terry Pratchett died yesterday. He was 66 and suffering from early onset Alzheimer’s disease. He was a brilliant mind, and the world is so much poorer for his absence.

In 2011, three years after his diagnosis, he made a film called Choosing to Die. He met with an extremely British man, Peter Smedley, who had motor neurone disease – known here in the States as ALS. Peter was about the same stage as I am when he chose to die, weakness in his legs that made it difficult to walk and get up out of chairs. He had a very bright mind, and saw clearly the end of his path. He didn’t want his story to end that way, so he went to Switzerland and wrote his own exit. His wife was immaculate and also extremely British and very “keep calm and carry on”. They both kept a very strong face through it all.

I did not expect to actually see the man die.

I am glad they filmed it. It was a very good and honest look at the mechanics of the assisted death. And even though it was hard to watch, I am grateful that he shared his story. It was surreal to see someone at the same stage as I, with the same mindset, take the steps. Earlier than I would ever have. So much earlier. But he knew where he was going and did not want that undignified end, and so he took the poison and his wife stroked his hand and he fell asleep and died.

And he had to go to Switzerland to do it.

I am so, so grateful, again, to live in a state where it’s legal. How anyone can deny someone the right to die comfortably in their own homes on their own terms is quite beyond me.

It is, indeed, a beastly, undignified business.

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.

Vanitas Veritas

February 27, 2015 tragerstreit2 Comments

Long before I was bestowed with the cosmic middle finger that is ALS, I was gifted with a genetic grab bag of fuckery called ectodermal dysplasia. (There’s GOT to be a cousin-marriage something or other back in my genealogy, because COME THE FUCK ON. My DNA is FUCKED. ) Anyway. I promise this is related to ALS, but I need to give you a bit of backstory.

Ectodermal Dysplasia, for those of you that can’t be bothered to google that shit, is a family of genetic disorders that causes defects in the hair, nails, sweat glands, and teeth. I have a VERY VERY mild case. Some people with these disorders are born with no sweat glands and have to wear cooling vests their whole lives, or have webbed fingers and toes, or no hair at all. I can sweat, I have some if not all of my teeth, I have hair at ALL, I’m ahead of the game. I am very fortunate that I was affected as little as I am.

But growing up with it as a kid?

Brutal.

My hair grew in transparent blonde and sparse, and only ever to about 2 inches long. Except on the sides of my head, that grew up to four in wispy little threads that flew away from my skull like feathery peachfuzz wings. When it got wet, it disappeared. My eyebrows were transparent blond, visible only when I got really angry and redfaced, so they stood out white on my face. My teeth grew in all kinds of crooked and brittle and some never grew in at all. My nails are these paper-thin shreds of nubbins. I was a very weird looking kid.

Fuck, man, you know how kids are little shitheads. I had the nickname Bald Eagle in my neighborhood. The older kids would see me coming and yell, “THE EAGLE HAS LANDED!” and run away. When I was in fourth grade, one of my girl classmates confided to me that one of the boys (that I happened to have a crush on) thought I *could* be cute – if I would just do SOMETHING to my hair, because it looked weird. I had a crooked, gappy smile that I hid behind my hand when I laughed. I had an expressionless face, because my eyebrows were THERE, they were just transparent. Even the adults joined in, unwittingly, mistaking me for a boy until puberty offered evidence to the contrary. I went to a flea market once, when I was about 8 or 9, and I was looking at this vendor’s pretty little necklaces and things, and the shopkeeper came over smiling, “Looking for something for your girlfriend, hmmm?” I was too embarrassed to correct him. When visiting my great grandmother, making the obligatory visit to her next door neighbor Mrs. Day (who always had Grandma Candy) I smiled and thanked her when she told me I was growing up to be such a big boy.

As you could imagine, I had a little bit of a gender issue growing up. It didn’t help that I have NEVER been good at “girl”; I really WANTED to be feminine and cute, but I felt like I was putting on an awkward costume that didn’t fit any time I tried. I was a social weirdo and never learned makeup or dressing girly, I felt awkward and weird, this androgynous thing that didn’t fit in anywhere. I was already Strange, my brain full of ideas that didn’t occur to most, a very intelligent and bored kid, standing out because I was a loner and never felt like I belonged to any of the little school cliques, not even the nerds. I was the weird kid in the back, and weird looking to boot. No seriously. Here’s me at 14, never having had a haircut in my life:

My self confidence and ego never really had a chance.

Eventually I taught myself to embrace that weirdness and make it seem intentional – I dyed my hair strangely and scowled at everyone so they’d think that I MEANT to look that way. Androgyny was cool if you were a punk, man. Or something. I learned to hide it by being angry. I wore that anger as a shield, protecting the hurt and lonely little girl inside. The Bald Eagle is still a fucking RAPTOR man, and it will GOUGE YOUR EYES OUT AND FEAST ON YOUR LIVER. (Oh, poor, 16 year old me; I wish we could chat. How desperately you needed a hug.) But the anger just made me look weirder. My defiant, thrust out jaw just made my face square. My heavy lined eyes just made my invisible eyebrows more obvious. And I never smiled so no one would see my crooked teeth. And weird hair looks weird even if you try to make it look like you meant it.

It took me a lot of years to work through that anger, slowly discovering and adding weapons to my arsenal in my Battle to Defeat Ectodermal Dysplaysia. Eventually I learned to draw on eyebrows to fix my expressionless face. To use false nails to hide and protect my little paperthin fingernails and have pretty, feminine hands at last (they were the one part of me I thought were pretty). I was introduced to hair extensions, after an unsuccessful flirting with wigs, and eventually I even came to revel in my ability to change my hair in a moment’s notice with them. Long hair today, short hair next week, long again the month after that. Through all of this, I let go of that angry teenager, who in turn stopped shielding the lonely and awkward little girl. I learned to allow myself to be a little bit feminine and dress like a girl sometimes, because I actually AM female, goddammit. And it looked cute on me.

And then I had good enough dental insurance to fix my crooked smile and have a beautiful smile for the first time in my life. That was a goddamned game changer. My brothers and I have all suffered the same over our crooked, missing, brittle teeth (I have the better teeth out of all three of us, but got totally ripped off in the hair department). All of us have dealt with being asked if we’ve ever used meth. By dentists. Having methmouth when you’ve never even so much as smoked pot or had an alcoholic drink makes you self-conscious as shit. And it’s cost all three of us countless opportunities. No one wants to hire a methhead. No one wants to date a weird looking girl with a wonky smile. So when I could afford to bridge the gap in my smile, to have straight teeth, I actually felt more normal and okay than I ever have in my life. I went from this:

to this:

And my world changed. And I felt like I finally won.

What does all of this have to do with ALS. I know. Relax, Sparky, I’m about to get there.

It was a slap in the face to be diagnosed with ALS RIGHT when I thought I had all my shit together. I had a really good job that I really like, I was financially stable. I had just bought a house like a Real Live Grownup. And at last? I was at a really good weight, my teeth were awesome, I knew how to do makeup sorta, my nails looked fantastic, and goddamnit I was PRETTY. FUCKING FINALLY. It took 38 motherfucking years, but I actually felt pretty, and smart, and stable. A Real Live Person Who Doesn’t Suck. I still had some shit to sort through, but I was doing pretty fucking good, all told.

…And then just when I think I have shit solid and good, ALS fucks it all up. I’m not going to be able to do my awesome job that I like, working with people I love, eventually. I have to sell the house I am in love with and didn’t even get to finish decorating because I can’t deal with stairs for much longer. I gained a fuckton of weight back because of my good friend Stress Eating. Hey, did you know there’s a German word for the weight you gain from emotional eating? Kummerspeck. It literally translates to “grief bacon”. Isn’t that the most AWESOME THING EVER. I mean, the weight gain sucked, but there’s a WORD FOR IT. And then being told by doctors DO NOT LOSE WEIGHT, you’re going to need it later, and people with extra pounds just tend to do better with ALS anyway. So here is your medical prescription to EAT WHATEVER YOU WANT. Don’t go all apeshit, I mean, we don’t want to have to fit you for a bariatric wheelchair, but you’re dying, fuck it, eat those nachos. Sucks about the not fitting into your clothes anymore though, yeah? Don’t worry, eventually you won’t be able to eat except through a tube and you’ll fit into all that again. So it all works out, yeah?

Where was I.

Right. Early on, it hit me, something stupid and vain – eventually I’m not going to be able to draw my fucking eyebrows on anymore. And I think I’ve just TOLD you why, that bothered the ever loving fuck out of me. I could rely on people to get me dressed, and probably put makeup on my face, but there were going to be days when none of us could be bothered to do that shit. And it really fucking bothered me to be reduced back to my 14 year old self. I had just CONQUERED that, I am not HER anymore. But I’m not going to be able to put on this Armor of Normal Seeming (+1 to appearance and +3 to charisma) forever. Towards the end of days, I’m going to be this emotionless husk, and I’m not even going to have any fucking eyebrows.

And it’s expensive, and vain, and fuck you I don’t care. I got permanent cosmetic tattooing done on Wednesday. I paid a stranger $395 to tattoo eyebrows on my face. And it looks fucking awesome.

And I can’t quite articulate the sense of..relief? Success? Booyah? Even though it was expensive and there are SO MANY better uses for the money, there’s a weight off of me with the knowledge that I can’t go back to 14 year old me anymore. I’m permanently done with her. My teeth are permanently okay, even if I DO still have a baby tooth on the bottom and not all of them ever grew in, they look like normal people teeth when I smile. And now my face is permanently okay, because I don’t have to draw on expression every day. What was already there has been highlighted, so when my hands no longer work, I can still quirk my eyebrow when you say something stupid. For awhile. And then I won’t be able to move my face at all, but my eyebrow game will still be fucking strong, yo. And I’ll never be that expressionless, angry little girl again. I’ve graduated, the tattoos on my face a diploma from Fuck That Shit University, signifying a degree in Being Just Fine, Thanks for Asking.

I am gonna go down, ALS is eventually going to kick my ass, but Ectodermal Dysplasia can fuck off forever. I beat it. I win.

The Eagle has fucking flown.

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.

Protected: Not It.

February 23, 2015February 24, 2015 tragerstreit

ALS : FTS

Seriously, Fuck This Disease.

Author: tragerstreit