Tag: weak and afraid and still awesome

Most Days

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It seems like every time I post/say/THINK anything remotely depressed-sounding, I am blasted to smithereens by very well-meaning people giving me encouragement and light. Like, I have to be cheered up at all costs. But I don’t need it,usually. And when I do need it, I will say so. Lest you guys get some idea of me drowning in my own misery as I die slowly, let me explain something.

Most days, I’m good. Great, even. Most days I don’t even THINK about my disease, I don’t think about the ugly implications of my staggered walk. And when I think of the future on those days, it’s not a bad place to be. I’m a naturally upbeat person, and it’s easy to be in good cheer. I take the greatest of pleasures in the stupidest things, and that keeps me going. Life is good, everything’s great.

Some days, I am aware of my illness. Maybe it’s particularly hard to walk that day. Maybe I’m suffering from an overdraft of spoons from the day before. Maybe I have a doctor appointment that day. For whatever reason, I am aware of my disease and the limitations it puts on me. But on those days, even when I am aware of this disease cutting my life short as I breathe, I’m still good. My disease is present but it’s not really a problem. I have a realistic idea of what’s coming, but I have security in the knowledge that I have the best team in the world at my back. I can handle this. I can handle everything. Life is okay. Everything’s good.

Every now and again, there’s a moment of panic. It’s usually on the tail end of circumstances conspiring against me, for whatever reasons. My defenses are low. I am a bit “squishy”, as I call it. Just ..sensitive and prone to cry and things seem a little dark, maybe. And then there’s that moment it turns, and everything collapses in on itself and I am crushed under the weight of it all. These days are very rare. But they are inevitable. I’ve got a terminal fucking disease. If I didn’t sink under the weight of how badly I’m being fucked over occasionally, it’s likely I’m just in denial.

Things have been conspiring. I lost my 19 year old cat and just turned in his unused pain medication to my vet, so that someone else who can’t afford it can give their pet some pain relief. I’ve been GO GO GO the last few days and I’m exhausted. There was a screwup with the post office which made them think my house was vacant and that really, really fucked with me because it was a reminder that I don’t get to stay here. The motherfucking shingles. NOTHING seems good when you’re in pain. I’m kind of freaking out about money; I’m about a grand in to my credit card, with a $3k property tax bill going to come due at the end of the year and then January resets my $2k deductible and I’m supposed to go to Europe and I’ve got nothing to spend and…yeah. I feel like I’m financially drowning.

And then this video was shown to me this morning:

It’s…really fucking powerful. Stay past the bikini babe. It’s worth your time. And it left me really raw. And I talked to my brother about putting in a hand rail because I’m beginning to need both hands to haul myself up the stairs, and it hurt. I thought about having to throw all of my things in boxes and maybe not having the strength to unpack them by the time I bought a new place and I panicked.

Tonight I’m tired. And in pain. And lonely. And afraid. And worried. And weak. And angry. And depressed. And really fucking unsure where it all goes from here. And tonight I know there’s not a goddamned thing I can do about any of it.

Tomorrow I will be fine, but I am having a bad night.

And nothing will fix this. No amount of being told it’s going to be alright will MAKE it alright. And nothing will help except to let myself cry.

And so I lock myself away from the world, and I cry.

“Put a Smile on It!”

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“…Put a sock in it!”

I’ve been pretty damned whiny the last couple of days because I’ve developed shingles. Which, if you’ve never heard of it, is FUCKING AWFUL. It sounds all happy! SHINGLES! YAY! There’s probably confetti involved! But it’s basically a really horrible version of chicken pox, which can happen to anyone who’s had it; the virus lives on in your body and randomly it may decide to reactivate. Only instead of the red itchy bumps all over, it’s a really angry, blistery rash and searing pain in half my body, fever, nausea, and muscle aches. It’s like the worst sunburn you’ve ever had and the flu at the same time. I am the queen of high pain tolerance – I’ve had dry socket and never even winced when the dentist packed it with that nasty gasoline and cloves shit – and this has had me whimpering and writhing. I had oxycodone left over from the muscle biopsy; I took one last night just so I could get some fucking sleep.

It really fucking sucks. And I’ve NOT been shy about saying so. Because I am goddamned miserable. And while it happens completely at random, one of the things that MAY trigger it, is stress.

Okay, so ALS causes stress. But the actual disease has been the LEAST of my worries the last couple of weeks. I had to put down my cat, Midori, after living with him for 19 years. HALF OF MY LIFE. It was emotionally devastating. I adopted a new kitten, which is a happy stress, but a stress nonetheless. I gave a talk in public which triggered all KINDS of nervous stress. I attended a party full of strangers. There WAS my first Clinic session, too, and the resulting “…goddamnit” of beign assigned a cane and a breathing exercise, but seriously? ALS is the least of my concerns right now. Real life is happening.

And so today, when I posted a tongue-in-cheek: “I’ve figured it out. I have shingles because I’ve been telling people how lucky I am that ALS doesn’t hurt! hahahahhahaawww sad trombone” I didn’t really think a whole lot about it. I had just been enthusing Tuesday afternoon after the ALS talk I gave that it was AMAZING that nothing hurts and how lucky I am. The timing struck me as funny, was all.

But then I was told that I need to cheer up. If I just keep a good mental attitude, I might be able to beat ALS. Just..buck up! ALS won’t kill me if I just think happy thoughts and don’t let it!

Okay. this is important, so I’m putting it on its own line. In bold.

Positive thinking has never accomplished a documented medical result.

NEVER NEVER NEVER. It is not going to cure depression, it is not going to cure a broken leg, it is not going to fucking cure ALS. And I DO have a positive outlook, and I really DO believe things are good and somehow everything is going to be okay, somehow. ALS is not my life. I am not All Disease, All the Time. That’s just not how I work. But having a sunny disposition is NOT going to cure me. I am dying because my motor neurons are burning out. No amount of laughing is going to keep me breathing. No amount of happy thoughts are going to allow me to continue to put my face in a smile shape when my facial muscles stop working.

A positive attitude dictates HOW I have the disease. It does not dictate IF I have the disease.

A cheerful disposition means I don’t lose friends by bringing up ALS and how I’m going to DIE in every conversation and make myself miserable to be around. It means I continue going to work and don’t wallow in self pity while I cease to be able to afford my mortgage because disability is a fraction of my usual pay. It means I keep going as usual. I continue to live my life, as normal, and don’t become a burden to be around, even to myself. It means not every waking moment is filled with terror and “JFC I AM GOING TO DIE WHAT IS THE POINT OF ANY OF THIS SHIT”. It means when someone invites me to visit them in a years’ time, I say “that sounds lovely!” instead of “I don’t think I can, I’ll probably be in a wheelchair by then.” It means “I’ll try” instead of “I can’t.”

And the occasional whining is to be expected. There are aspects of ALS that fucking SUCK. That whole…”you’re gonna die sooner than you thought” is pretty shitty. No longer being able to dance, sucks. Having to take five minutes to haul your laundry up the stairs sucks. Realizing that you forgot something downstairs and having to think long and hard about whether it’s worth the effort to go back, sucks. A stress-induced searingly painful fevery rash of DOOM sucks ass.

And I am fucking allowed to complain about these things. CENTER CIRCLE, BITCHES.

It does not mean that there’s nothing more to my life. The new kitten does NOT suck (except when she jumps up on the bathroom counter and knocks over a glass that shatters allllll the fuck over my bathroom floor). The fact that I am still able to work does not suck. Birthday cake Oreo cookies do not suck. Friends who are willing to help me get wherever I need to go do not suck. The good far, far, far, FAR outweighs the bad. All the time. And always will.

But knowing this, and having a fantastic attitude towards life, the universe, and everything, is not going to save me from an early death. And that’s OKAY. I’m alright with that. It doesn’t mean there’s no point to having a good mentality, it just means it’s not a cure. You *can’t* cure this disease. All you can do is treat the symptoms. And a good goddamned attitude is an amazing restorative.

In the meantime, you’re essentially telling me to just put a superficial happy face on a horrible and serious fucking situation, and that’s selfish. All you’re really telling me is that I can’t turn to you when I’m in a low spot. You’re making me resent you because you’re negating my frustration. You’re telling me I’m not allowed to be unhappy.

You’re telling me that it’s *my own fault* I’m dying because I’m just not happy enough.

And that is COMPLETE FUCKING BULLSHIT.

Being a Force for Good

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I have committed and embraced the Walk to Defeat ALS in Portland. This is a thing. It’s happening. As my team is called The Godzilla Squad, it was suggested (jokingly) that we could all get these:

RAWR
Godzilla REPRESENT

I thought that was basically the best thing ever. I said I TOTALLY needed that. Though, that thing is like $75 and I didn’t really mean that; hahahah how would I justify affording that, no matter how awesome it was? Someone suggested that we make them our team costume, which I agreed would be awesome and hilarious. And then my darling friend Leendah said, “How many do you need and when?”

…I had almost forgotten that Leendah is a kickass costume designer in real life.

Long story short, she is making dinosaur hoods and hoodie sweatshirts for my team at cost.

And the amazing kept happening. People I have not seen in literally a dozen years have signed up to walk with me. My friend Marina not only donated to the walk, but offered to sponsor two people walking with me who wanted hoodies but couldn’t afford the $50. My team is already 8 people strong and has raised $450. That’s….amazing. Seriously, seriously amazing.

There are going to be two talks here at Intel, to recruit for the walk and to just flat out solicit donations, and I’ve agreed to speak at both of them. I am apparently the only person with the disease (that the ALS Association knows about) who currently works at Intel. It’s one thing to say “please give us support in the name of this guy who used to work here and has died”, but it’s another to say “Hi. I work with you guys. You might have seen me in the halls, even, I’m kinda stand-outy. I have this disease, it sucks, please give us a hand.” I’m hardly a Fundraising Warrior or anything, and I’ll never be a marketer even for this – I’m not built for it at all. But if my voice can help out, then I’ll use it towards this goal, while I can.

Tomorrow, for our team staff meeting, I asked my manager for permission to tell the team about it and see if any more of them wanted to join me. I’m not really asking for money, and it won’t cost Intel anything, so he said okay. I’m nervous about it – I’m not good at asking people for something, as I’ve said, but I also realize that for a fair few of them, it will probably be the first time they’ve heard about my disease. And that I have it.

So THAT will be interesting. I am hoping it’s a positive experience with a minimum of awkward.

This is not at all how I imagined my life would turn out to be. But I have to say, I’m not entirely discontent. Some fucking AMAZING people have come out of the woodwork, and my disease has given me some unique opportunities and put people in my orbit that wouldn’t have been there otherwise. I’m really very grateful.

As usual, babies, I’ll tell you how it went, tomorrow.

Support Structures

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I never got to meet the other woman involved with the voice banking story; she’s much further along in her progression than I am, and it’s really hard for her to get around, so they did her segment at her house. She sent me an email yesterday, expressing regret that we didn’t meet. She asked if I had been to a support group yet, and told me “It can be a bit scary at first but you soon forget all that and come to enjoy the great people.”

Scary, maybe. Intimidating as all FUCK, certainly. I’m an introvert, I have social anxiety, I…don’t do well in crowds. Outwardly, I’m just fine. Inwardly, my mind is racing “oh shit oh shit she’s going to come talk to us oh shit shit shit what do I even SAY oh shit here she comes she’s asking our name WHAT DO WE TELL HER oh right our name that’s easy. Ask hers. ASK HERS. CASUAL. FUCK. WE ARE NEVER GOING TO REMEMBER THAT. I hope we never meet her again even though she seems nice because we won’t remember her name and it will be HUMILIATING and OH SHIT SHIT SHIT SHE IS ASKING ABOUT SOMETHING. WHAT IS IT. DO I HAVE KIDS. OH SHIT. WHAT’S THE POLITE WAY TO SAY FUCK NO NEVER NOT IN A MILLION YEARS YOU MUST BE JOKING? “I have cats and that’s close enough for me”? Really brain? That’s the best you could co..oh she’s laughing. GOOD JOB BRAIN HIGH FIVE. Oh but what if she’s laughing AT US. OH GOD WHAT TIME CAN WE LEAVE HOW LONG HAVE WE BEEN HERE oh five minutes, that’s all? Shit. Shit shit shit.”

All social interactions are scary to me. With strangers, exponentially so.

Though, I admit I do have some fears about going to support group. I know it’s going to be a harsh reality check to see people in advanced stages of my disease. I’m not sure I’m ready to be confronted with that. I already have a little bit of the “huh, that’s what the future looks like” when I see people in wheelchairs. Mostly that’s fascination, though. But my real fear is that the support group is going to be like the ALS forums.

Because CHEEEZUS MARY CHRISTMAS.

The fucking NEGATIVITY and SELF PITY and ENTITLEMENT. “ALS IS THE WORST THING EVER AND MY LIFE IS SHIT AND NO ONE UNDERSTANDS AND EVERYTHING IS TERRIBLE AND HOW DARE YOU HAVE FUN AT ALL WHEN I AM DYING SLOWLY YOU SELFISH FUCKERS.” And then there’s the constant “We lost a member today! RIP Twitchy Twitchertons, who lost his battle with ALS today.” Negativity and Mortality! Two great tastes that taste great together! YOU GOT YOUR OBITUARY IN MY COMPLAINT! YOU GOT YOUR SELF PITY IN MY FUNERAL ANNOUNCEMENT! *slow camera pan as they both realize that they can be miserable..TOGETHER! Fade out as they live happily ever afte….oh who am I kidding. They die alone after alienating everyone they ever knew* And scene. Print it.

I’m terrified that support groups are going to be live action reenactments of all that. Because my social anxiety would never let me stand up and say “SHUT THE FUCK UP, SALLY, LIFE IS REALLY NOT THAT BAD.” “Yes, Don, you’re DYING. So is EVERYONE ELSE EVERYWHERE. You are not a unique snowflake and your terminal disease is NOT licence to be a FUCKING DICK.”

…I’m so gonna print that on a bumper sticker.

Well, at least I won’t have to deal with the “Sometimes? I get tired. And my leg fell asleep yesterday. Does this mean I have ALS?” people. “NO SRSFACE GUISE I AM NOT AS STRONG AS I USED TO BE I THINK I GOT LOU GEHRIGSES.” You’re seventy. Yes. You’re probably weaker than you used to be. IT IS CALLED AGING. It, too, is terminal, but it doesn’t have its own nonprofit. But I’m pretty sure there are support groups. They CALL it bingo night, but let’s be honest, that’s not what it’s for.

I’ll probably go and check one out, though. I’ll be brave. And hopefully I won’t have to deal with my OTHER fear, which is me sauntering in there with my leg braces and the others being all “PFFT, BRACES-GIRL, COME BACK WHEN YOU’RE DEALING WITH THE REAL SHIT.” even though I KNOW that’s completely irrational. There’s no DME exchange rate on entrance into the ALS Club. You must be THIS bogged down in medical equipment to go on this ride.

Support is important, though. As is advice, from people who have fought on the front lines, so to speak. The woman who wrote me that email suggested that I get a signature stamp made sooner than later – and I don’t know that it occurred to me yet, that I’m going to need such a thing. I bet there’s all kinds of amazing tricks to this shit, resources I don’t know about yet, that other people can give me. And maybe, when my bouncy happy freaklet self waltzes in there, maybe I can give them a breath of fresh air by NOT being one of the Forum People.

Because my second circle has strict orders to put me down, if that happens. Occasional lapses into self pity are fine, but if I become all about “WHY ME” all the time and “I HAVE IT WORST OUT OF EVERYONE ALIVE” then ….Old Yeller style, out back behind the barn. Ka-blam. I will NOT become that person. There’s enough of those assholes already, and they’re all on the forums.

Where the Fuck’s My Trophy, Then?

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A couple of weeks ago, I got a letter from the ALS Association: “The March of Faces Banner Campaign is a wonderful way to promote ALS awareness. A banner consists of a pictorial display of 20 courageous women and men, both past and present, who have been diagnosed with (ALS)… We are writing to invite you to become part of this important campaign by adding a picture of yourself to the banner.”

It’s an awesome idea, and I’ll participate, of course, if nothing else because I think it’d be awesome to have some girl with piercings and purple hair on their banner alongside all of the typical 50/60 something grandparent types. But there’s one thing about that letter that bothered the hell out of me. Something that’s ALWAYS bothered me when people talk about cancer, or ALS, or any other horrible disease.

There is nothing inherently courageous about being diagnosed with a terminal disease.

I’ve had a bone to pick with this thinking for a LONG time, and it’s especially near and dear to me now that it applies to me, too. ALS is not a qualifier for bravery, world. A kid with cancer is not automatically brave. Bravery and courage is a behavioral CHOICE. I did not have a choice in this. Because if I had? I would have said no. I AM A COWARD AND WOULD HAVE DECLINED, THANKS. BECAUSE I DO NOT WISH TO DIE.

Especially not of something like this.

Not everyone who has a terminal disease is courageous. Some of us spend the remainder of our lives whimpering in the corner. Or punching holes in walls. Not all of us just take it on the chin and carry on. We’re human. We’re weak.

And we’re scared.

Mostly though? Referring to someone as “courageous” just because they have a disease is completely unfair. It sets an expectation on them, that they may or may not feel up to living out. “The brave kids in the childrens’ cancer ward” are scared out of their minds. They shouldn’t have to BE brave, and you’re unjustly setting that burden on them.

It’s like saying SHUT UP AND BE BRAVE, QUIT YOUR WHINING, BE COURAGEOUS SO WE CAN LOOK UP TO YOU AND NOT JUST FEEL SORRY FOR YOU, YOU STUPID CRIPPLE. YOU WANT US TO FEEL BAD? THEN SHUT UP AND BE BRAVE.

The world seems to expect someone with a terminal/chronic illness to behave one of two ways. You can be bitter and weak, or you can be brave. You can never, never be both. You’re either angry and sick, and someone to pity, or you’re brave and courageous, and you’re someone to admire.

Guess what. We don’t need your pity OR your admiration.

The real harm in this thinking, besides the HOLY SHIT CRAZY AMOUNTS OF SELFISH, is that when you fail to be courageous all the time, they become bored with you and your story ceases to be compelling. How dare you be human. YOU ARE SUPPOSED TO BE AN INSPIRATION. YOU ARE BRINGING US DOWN WITH ALL THE CRYING. It’s not about how they appear to you, the reader; it’s a very personal and intense battle against their own bodies, their own hearts, their own faith. I do not have ALS to inspire you to believe in the triumph of the human spirit. The human spirit can go fuck itself. Sideways. And you’re just a casual observer in this fight. You don’t get to pick and choose the qualities that make for a better story. If you’re going to support someone with a chronic or terminal illness, you owe it to them to allow them to be weak, too. You don’t just cheer on a runner at the finish line. That’s not when you need the encouragement the most. You don’t need to be told you’re amazing when you’ve just won. You need to be told waaaaaaaay back at that third turn, there, when your lungs were on fire and your legs were jelly and your mind was a blur of I CAN’T. I CAN’T. I AM GOING TO DIE HERE. I CAN’T. I CAN’T.

I’m doing just fine. I will be brave in parts, and weak in parts, and strong in parts, and soft in parts. Sometimes I’ll scream rage into the void, sometimes I’ll melt quietly in the corner, sometimes I’ll be paralyzed with fear. You’re welcome to observe, but I don’t owe it to you to make myself a plucky heroine in a made-for-TV drama. I’m not in this to be a Reader’s Digest inspirational story. I’m not courageous. I’m just a sassy bitch. So many other people out there have it so much worse, there are so many other more interesting stories to be told. It’s just that I can only tell mine.

It’s the only one I know by heart.