Tag: god dammit all anyway

Complicated

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“It occurred to me that at one point it was like I had two diseases – one was Alzheimer’s, and the other was knowing I had Alzheimer’s.” -Terry Pratchett

“Complicated.”

It’s become my go-to phrase when people ask how I’m doing. “Life is complicated.” Check off that box on Facebook, I am officially in a relationship with ALS and It’s Complicated.

Nothing is simple. Everything is terrible, and everything is wonderful. I am cursed and blessed. And everything is complicated. I have, as the late and very great Sir Terry Pratchett said, two diseases. Two minds. The ALS mind and the Knowing I Have ALS Mind. I call them Future and Fatality. They argue constantly over everything I do, every plan I make is scrutinized by both sides, every human interaction is watched with both minds. Future is all about the practicality of the day to day, maintaining a sense of normal through all of this chaos. Fatality is about the hard reality that my time is very much abbreviated and some allowances must be made. Future is the one saying I have to work until I can’t, so as to prolong the quality of my life and finances for as long as possible. Fatality is the one saying FUCK THIS, we are DYING, who the fuck wants to work until all quality of life is gone?! Let’s spend our money making the last days AWESOME. Future says, yeah, but we still have to go to fucking work tomorrow, you moron. Disney World souvenirs don’t buy themselves.

They’re both right.

…It’s complicated.

There is definitely some sense of maintenance of the status quo that’s necessary. Continuing to work not only provides a stronger income than I’ll get on disability, but it’s feeding me a sense of normality, and there’s a great comfort in the routine. I can handle this. Yes. I’m dying. But there’s still work to be done. The floors still need swept, the cats need feeding, and while I’d like to do nothing but sleep, that’s not going to help anything. I can continue because I must, life is moving and so I, too, have to continue to move. Acknowledge that I am not dead yet.

There are definitely concessions that need to be made. Considerations to signing a 30 year mortgage that I know goddamned well I’m not going to see the end of. Allowances to make life fun while I still have the ability to participate. Plans to make so that memories are made and things don’t get left undone. Write your fucking will. Go ahead and spend some money on stupid things because I know in my heart that it doesn’t even matter. Make myself as happy as I can, while I can. Acknowledge that I am not dead yet, but WILL be.

Their key arguing lately has been about living situations. It’s amazing what will trigger me and what won’t, and unfortunately I never know until it happens. I can brace myself for things I think will be problematic, but sometimes they aren’t. Sometimes it’s the stupidest shit that trips me up. And it changes from day to day. Some days I think living with Danielle will be just fine, and some days I think I will do anything within my power to live alone until I absolutely can’t. It’s not about living with her, it’s about living with ANYONE. Some days I accept financial advice with grace, and some days it’s FUCK YOU I KNOW HOW TO SPEND MY FUCKING MONEY LIKE A MOTHERFUCKING ADULT. I HAVE GOTTEN THIS FAR, YOU KNOW. I AM NOT STUPID. Anger comes up unexpectedly, avoidance gets triggered, there are hurt feelings and tears and anger and misunderstandings, and later you sort through it all and you don’t know what happened, even after.

My main babe and I had a huge thing last week. I wouldn’t call it a fight. It was a..surprise boundary test that went very poorly. Plans kind of got put on hold, and I wound up making a rash concession that I had to withdraw and I feel fucking awful about it. Lines were drawn. Many many tears were shed and for a few days there, ativan was popped like candy to try to stave off the panic attacks that just kept coming. It cemented our need for couples counseling. It brought up a lot of good questions. It hurt a lot of feelings. I really, really can’t accept help gracefully and need to work on that. I need to draw lines and feel comfortable, as the center circle, maintaining them. Even if I’m wrong, I’m in charge of my own care. And even if I’m right, other peoples’ opinions are valid. Even if I choose to ignore them in favor of what I want. And a lot of times, I don’t know what the fuck I want.

It was complicated.

We’re still okay, of course, we love each other to pieces and that’s never going to change. It was a surprisingly brutal and hurtful exploration of caregiver/cared-for relationships and I did not like it one bit. And it’s going to continue to happen, and we’re both going to get stronger for it, and it’s going to fucking SUCK while it happens. I hate making her life hard. But I can’t help but do so. Fucking ALS.

I wound up looking for, and finding, an apartment of my own in the interim. My house closes on the 6th of July, but the housing market is extraordinarily chaotic right now, so finding another place to buy is impossible. Especially when I don’t even know what the fuck I’m LOOKING for, and things I am okay with on paper suddenly turn in to panic-inducing dealbreakers. So I am going to live in an apartment, and continue to be alone while I can, and get through life with my best babe and my awesome planets in orbit as best as we can manage. Looking for an apartment is always shitty, and right now rents are INSANE – I wound up accepting an apartment that is 2 bedroom and less than half the size of my house with 6 square feet of patio and a tiny kitchen for $50 less than my goddamned mortgage. And I’m having a really hard time with it. I sit here, typing this, looking out at my amazing back yard that will be someone else’s in a month’s time. I walk the floors I installed myself, I sleep in the room I had not even finished carving out for myself, I sign a lease with all of these rules and regulations that being a homeowner just didn’t have. And it’s hard. I’m glad I found a place and have a place to land, but losing this dream of mine is hard. I’m grateful the work is lessened, happy to have less space to maintain in my lesser state, but goddammit this was MY HOUSE. Future is happy that I’m being so practical about it and is planning the move, and Fatality is punching holes in things when she’s not crying her eyes out.

It’s complicated.

Yesterday we moved all of the extraneous stuff that had been taken down for staging, all of my books and DVDs and winter clothes and decorations and baking gear. We put it in storage. It was a really hot day and we all sweated a lot. The heat kept my mind from wondering if I’ll ever unpack some of these boxes. My ability is waning every day, and the longer I wait to find my proper space, the less power I will have to make it my own. I sacrifice my future nesting to further my independence today. And the weekend was a constant reminder of my lessening ability. My handwriting, as I filled out the lease paperwork, was atrocious. My hands are suffering and I am trying desperately not to just freak the fuck out all day, every day. My stupid feet grew wrong and I’ve got nasty bunions on both my feet, and because of the muscle loss, the bone is barely covered with a little bit of skin and it rubs and pinches and is excruciating no matter what shoes I wear – but the only real fix is surgery, and do I seriously want to give up even MORE mobility to get it corrected? Every movement costs more energy than ever before, and even though I wasn’t allowed to move boxes, I am physically DONE from this weekend. DONE DONE DONE. I am tired and sad and grateful – so fucking grateful – to my friends and brother for coming to my rescue on a miserable day. I put them all through a rough day, and they loved me enough to stay. And though I was grieving, I was grateful.

Future is kind of pissed off that I spent so much money for the lease and renting storage space, because that’s money we could be putting away, and it’s really impractical when I know I’m just going to have to give in eventually anyway. Fatality is flipping her the bird and patting my head and telling me it’s going to be alright even though we both know she’s lying. Usually I side with Future, but right now she can fuck off. I have to leave this house that I love, and it’s cruel that it’s so much work to make that happen. Fatality knows we have people who will help and just chill the fuck out and maybe play some video games tonight instead of worrying about it.

I guess this post kind of wandered all over the place. Sorry. My brain is full, I am mourning my loss of independence even as I struggle stupidly to hang on to a shred of it at great expense, I am obsessing over every detail even as I am actively avoiding thinking about any of it. And hopefully figure out the fine line between standing up for what I want and deciding my own fate, and being a goddamned idiot who needs to admit that she’s not as strong as she wants to be. To learn to accept help gratefully while still asserting control over what help I accept. Stubbornness versus weakness, and strength perceived as stubbornness versus self delusion perceived as assertion. And I usually can’t even tell which is which.

All my life, and now so more than ever, I am very, very complicated.

He, She, Me.

tragerstreit4 Comments

He:

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

…and I worried.

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

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

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

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

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

It’s the only thing within my power.

She

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

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

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

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

Me:

I’m losing strength in my hands.

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

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

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

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

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

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

And it scares the motherfucking SHIT out of me.

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

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

And I’m really, really scared.

Gravity: It’s the Law.

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I want this out here but I’m not going to say much about it because I’m trying really hard to not let it get to me so much so I’ll be quick.

I had a fall tonight. My first proper one. I was disembarking from an Amtrak train, stepping down from the train to the little foot step they have, and my leg just totally gave the fuck up and I fell. There was just nothing to catch myself on. I’m not really hurt, but there will be bruises and scrapes. Mostly I was humiliated. I was sitting on the ground trying to figure out how the hell to get back up because all I had for support was a stupid yellow footstool while total strangers were bending over me, asking am I okay, do I need help up?

“I’m fine, just really embarrassed,” I told a really concerned woman. She assured me there was nothing to be embarrassed about.

There was an Amtrak employee with the club car right there, apparently he’d been waiting for me because the conductor had told him there was a woman with a cane. The conductor had noticed me, because the train came on the opposite track that the station signage said, and everyone had to run to the opposite platform. And so I held up the whole train while I crossed under the platform and back up to the other side, and the only doors they had open were at the front, so it took me forever to hurry over. He knew damn well there was a woman with a cane on board. And that effort is probably why my legs didn’t quite have the strength to manage – I used up my fucking spoons just getting ON the damned thing, so when I got off, my leg just said “nope” and folded under me.

The driver helped me up, basically by having me wrap my arms around his neck and hauling me up. He asked a million times if I was okay. I repeated that I was, just embarrassed, and he also told me it was nothing to be embarrassed by. He just wishes he’d seen me before I tried to step down. “I’ve see perfectly healthy people WITHOUT canes fall while climbing down.” He gave me a ride through the station and out to the front, where my little brother Justin was waiting for me.

I knew my first fall would really suck, and it does, and I’m not freaking out but it’s really frustrating and sad because I know this is just the beginning. And I hate it.

The weekend was otherwise perfect, and I hate that it ended on this note. But it didn’t ruin anything by any means, and I’m going to end this before I dwell on it too much and it DOES wind up ruining it.

Legal

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Man, real life is just NOT going to give me a break lately! Sorry! But it’s also awesome that I’m still able to DO so much and keep up with what I’m being asked to do. So I will take this all optimistically.

Anyway. The lawyer.

First of all, we used the Crowdrise funds to pay for it, which I felt weird about, but that’s precisely what that fund is for. So it was $650 NOT out of my pocket. Yay! Thank you everyone who donated to that. I love you. For reals. I’ve put off this legal appointment for a long time because I simply couldn’t afford it.

We were recommended to use a particular elder care lawyer, who had a lot of dealings with ALS patients. For lack of knowing what the hell we were doing anyway, we went with him. He had the stereotypical swanky corner office with floor to ceiling windows, nice couches. I was completely intimidated, I won’t lie. Everything about the place said “You can’t afford this.”

We explained what my situation was. Dying of ALS, need to get my affairs in order. We explained what we wanted. Answers on particular laws and financial advice. I’d filled out a questionnaire (why does that word have two Ns? Millionaire doesn’t. Weird.) that detailed my pathetic assets. Which basically amounted to the life insurance policy through my employer and a little bit of 401k, and my house. Which I still owe almost everything on because I’ve only lived there a year.

(Goddammit. One fucking year. FUCK!)

I told him I was planning to sell the house and buy something single-story. He looked at me like I was on drugs and told me he would absolutely not advise buying another house. I’m not going to get any financial benefit out of it, he told me. It’s going to be nothing but a money sink. Consider renting. There are laws that say landlords HAVE to let you remodel to be ADA compliant. There’s subsidized disabled housing, too, but the wait list is like 2 years and I’m not even actually disabled yet so I can’t even START that process. So why he brought it up I don’t know.

Danielle (my bestie and primary caregiver to be) and Gecko (my brother and finance manager when I die) were with me, and both had a lot of very good questions. Danielle asked about Medicare and Medicaid, what they would cover, how would we/what will be appropriate procedures to move me to assisted care living, ten fifteen twenty years down the road when I need it?

He looked genuinely surprised. “Ten years? Did the doctor give you that long?”

Um. “I have an extremely slow progression,” I told him. “Two years since I noticed a problem and I’m still walking.”

“OH. Oh okay. Okay. Buying another house is NOT so far fetched,” he told me. “Usually when people come to me, they have a small handful of years left. Three maybe. Buying a house you’re only going to have for three years is not advised, but you’ll get benefit out of it if you live there for ten.”

We talked about in-home care vs assisted living. How much worth you have and how much you have to use up before Medicaid kicks in. Living on SSI and how much money you get to keep (hint: HARDLY ANYTHING). In assisted living? It was like $20. That’s all you get. They take care of your housing and food and medical care, sure, but entertainment? Clothes? Toiletries? if you have a cat? You’d better figure it out because $20 is all you get. If you live at home you get to keep more of it, but of course you have to deal with mortgage and bills and food on your own. It’s REALLY not a lot.

So, hope you’re independently wealthy! Cause otherwise your life is going to be small and hollow. Sorry your disease sucks, but let’s make it worse by bogging you down with money woes and bureaucracy and complicated decisions! What can you afford? Nothing! A small bed in the corner of a nursing home somewhere where we’ll tuck you away there until you die.

We talked about executors of estate, who I want to have as my finance controller, who I want to be in charge of medical decisions. He gathered information and after the appointment he mailed me papers to certify all of that. He told me to get my living will in order and spread copies of that to everyone. He also said we need to draw up my will to state who gets what portion of what assets I’ll have, and I can attach a sheet later dividing up physical goods.

I kind of froze. Who gets what? I don’t fucking know. I threw out some percentiles, and Danielle insisted she did not need to be figured in there anywhere but if anyone deserves ANYTHING when I die then holy fucking SHIT is it Danielle. My brother Justin a close second. Gecko third, for being willing to deal with all my debts and shit when I’m dead.

Though I DID find out that when I die, Gecko will NOT be responsible for dealing with my debts. With very small exceptions (that I do not have), those debts get written off when I die. “I’m not suggesting you go run up your credit cards,” he cautioned with a shrug. “But.”

When we left, my brain was full of doom and money and gloom and responsibility and numbers, so many fucking numbers. What’s fair. What’s right. What’s necessary. Next steps. Long term, but not long long term because you never know. I was keenly aware of my situation. How little resources I have. How much money it’s going to take to keep me alive. How little time I have to save any of it.

I was completely overwhelmed, and really wishing I drank at all.

It’s a fucking complicated thing, dying. And it seriously is unfair that this diagnosis does not come with a lawyer, an administrative assistant, and a kitten.

Falling with Grace

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I went out to get the mail yesterday after work, and waited for traffic to cross the street. My street’s the only one in the neighborhood that goes all the way through from one major road to another, so it’s busy. Coast is clear, I step off the curb, but here comes a truck. He’s waiting for me, how nice! But the other side is not clear, and it looks like there’s a few cars, so I don’t want the truck to wait for no reason. I think that I will signal to the truck driver that I intend to wait for traffic by stepping back on to the curb.

Except that doesn’t go so well.

Instead, I don’t have the strength in my legs to make that step back, and so I wind up on my ass on the curb in some very crunchy grass. My neighbors don’t water their lawn any more than I do. I’m not hurt at all, just embarrassed, and I laugh nervously, shake my head, and flash the truck driver a thumbs up. Like, hooray for that! ha ha ha I just fell that’s so funny. But I’m okay! He laughs, and drives away.

I wait for traffic to clear to try to stand up. It takes me a try or two.

And I’m not going to lie, when I got back in to the house, I cried. And felt an irrational anger at the truck driver, even though I know if he had understood why I just fell, he wouldn’t think it was funny at all. And I was laughing, too, and he has no idea that it’s a nervous habit I’ve had all my life. When I’m angry, I laugh, and then I cry. When I’m hurt, I laugh. When I’m being insulted, I smile. Until I’m alone. And then I cry. But still I’m a little angry that he didn’t understand it wasn’t my fault I fell. It wasn’t clumsiness. It wasn’t. fucking. funny.

This is the fourth fall. It’s not the worst. The worst one, thankfully, didn’t have any witnesses and was just scraped up palms. It was the day of my diagnosis and my mind was elsewhere so it’s hardly surprising I didn’t quite make the curb. They’ve all been the result of trying to step up and not quite making it, and then not having the strength to correct my balance. So I just kind of sit down. Or kneel. I’ve never been actually hurt, they’re gentle falls.

But they’re a precursor of things to come. A sign that things are going to get worse. Hateful little reminders that my time on my own two feet is limited. The fall itself is frustrating, of course, and humiliating, but they echo of disability and impending loss. There’s no outward injury, just a cringing inside and fear and future loss.

There will be more. Worse ones, too, I wager. And in public, I’ll fall with grace and good humor, and joke about it, and feel like dying just a little, and never let on that I’m not actually okay.

“Nothing bruised but my ego,” I joke. But that bruise hurts like hell.

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.

Denied

tragerstreit6 Comments

Dr. Goslin’s sidekick, the amazing and trusty Donna, emailed me this morning.

“Cigna denied the prior authorization request for Athena. Dr. Goslin did a peer to peer review, and they still denied it. It is unfortunate that this got dragged out so long, only to have them deny it in the end. I am sorry.”

Athena, of course, being the company that does the genetic testing. We were going to see if I had the markers to allow me to participate in the bulk of clinical trials going on. And Cigna said no. Even after Dr. Goslin explained to their faces why it was important. And it IS important.

I feel defeated. Like…this test? And the ability to participate in the best research going on? It gave me hope that maybe my fucking disease might be USEFUL to someone. We won’t see a cure for this in my lifetime, but goddammit I wanted to be a datapoint at least in GETTING there. I want to HELP.

I don’t know how much the test costs. The last one was nearly $12,000. So yeah, I won’t be able to just DO the test on my own. I am beyond frustrated. I am angry, defeated, disappointed, crushed, depressed, all of this and everything else.

I want this fucking disease to mean SOMETHING to SOMEONE. To get SOME good out of it. To be useful.

And now instead of having the chance to be a data point, I’m relegated to be a statistic.

Home Owned

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For the longest time, I never thought I’d want to own a house. It seemed like a lot of work, and a lot of money, for little reward. I got married, and the idea of owning a house didn’t seem so bad, but still way more work and money than I ever wanted to put in to it. The marriage ended, and I had a three bedroom rental house to myself, and..I liked it. I could put whatever I wanted, wherever I wanted. I could cut out the place and make it my own.

Almost.

I could paint, sure, but..it still belonged to someone else, and the yard was the size of a postage stamp. I wanted a garden. Fruit trees. A yard I could sit in the shade in, and read books. Build a catio, hang out with my cats while I tended the garden. Suddenly I could see myself owning my own house. So I did some math, and some future projecting, and I applied for preapproval, and got accepted. So suddenly I was house hunting. That took FOREVER. And when I finally found the house I wanted, the house I could see myself living in for the foreseeable future, it turned into a short-sale fiasco that took six months of babysitting for signatures and phone calls and a lot of work from the most excellent real estate broker in Portland. (Seriously, if you live here and are in the market, hit me up for her contact info. I love her. She’ll do amazing things for you.)

But finally, finally finally the house was mine. I took possession of it in June of last year. It is, of course, a traditional two story house. Because I don’t like ranch style houses.

I’d only been noticing a problem for about 7 months by then, and they were so, so minor. A little hitch in my walk by the time I got the keys. Certainly nothing to freak out about. I’d started the gamut of doctor appointments maybe two weeks before I got the keys, and over the course of the initial appointments, when I found out that it might be a hip problem needing surgery, I made mental plans of setting up a futon downstairs while I recovered from surgery, but went ahead with all of the flooring and painting that needed doing. And time went by, and I worked on the house, and the limp got a bit worse, and it went from me not having a problem at all with stairs to me using the hand rail more often than not to now, where I need the hand rail to go up and can not carry anything down the stairs requiring two hands.

So now, here I am, in a house I fought for, that I can’t stay in. The layout of it is such that it is ENTIRELY unpractical to think I can still live here when it becomes necessary to use a wheelchair. Even with a stair lift, the doorways are too narrow and everything – my office, the library, my bedroom – is upstairs and there’s no practical place to have a bedroom downstairs. And no way at all to modify the half-bath into a full with a roll-in shower, certainly.

I’m going to have to sell this house. There’s absolutely no question.

The question I’m dealing with now, though, is this: Do I sell and just rent a place for as long as I can live alone? Or do I sell it and buy a single story, smaller house? And if I buy a single story, when? Should I wait for the last minute, until I just can’t even do the stairs anymore? I mean I haven’t even owned this house for a YEAR yet. Or do I start working on that NOW, so that I can buy a house and make it my own while I am still physically able? I was advised to make the necessary renovations as soon as possible.

Just, FUCK.

Fuck fuck fuck.

I don’t want to leave this house. I love it. It’s got its problems, but I’ve got plans. I JUST got my office done where I like it – and since ‘where I like it’ involves…lemme count here…26 wall shelves full of toys, 3 bookcases full of binders and books and toys, and a zillion plastic drawers with all of my computer parts and crafty shit..that was a HELL of a lot of doing. And the ceiling slopes from 11 feet on one end to 7 on the other, and the 11 foot wall is FULL of shelves with toys/models/ stuff. It took me a lot of hours on a 7 foot ladder to get all that up there. And I don’t think I could do that again. I have a ceiling fan that needs an extension put on so the blades can turn without hitting the slope of the ceiling, and I’m not allowed, says my brother, to climb up there myself and do it. The thought of having to pull all of that down again, when I only just fucking got it UP, actually sends me into a precursor of a panic attack. IT TOOK HOURS. It FINALLY feels like I live in here. And to have to pull it all apart and move it again.

FUCK.

But the alternative is to wait too long. And then someone else will have to pull it down for me. And then put it back up in a new house. Or I move in to an apartment, and it probably does not get put back up at all. And I spend the rest of my shortened life living somewhere that doesn’t feel like it’s mine.

So what do I do?

Do I abandon the house I wanted, and finish what I absolutely must in order to sell the place? And sooner than later? Leaving the vision I had of this place unfinished?

Do I go through the whole rigmarole of home searching again? It was SO MUCH FUCKING WORK. SO. SO. MUCH.

And then holy FUCK the whole MOVING thing. I HATE packing. At least this time, hiring movers isn’t even a question, but it cost me a thousand goddamned dollars to do it. I don’t have a thousand dollars to move. I don’t feel like I have the energy to pack my shit.

And then if I buy a new house, then I have to renovate the fucking place, sooner than later.

I just wanted a place of my own that looked how I wanted it to look, with honeycrisp apple trees in the back yard, a nice big kitchen where I could turn those apples in to pies in, and a quiet space to live alone. And now I can’t have that. But do I give it up now or later? Do I wait for it to become an issue? Or do I preemptively resolve long term issues now while I have the strength and the ability? How long do I let life happen to me before I do something about this?

Why couldn’t I have been diagnosed BEFORE I bought the place, dammit?!

Just..FUCK!

I have a lot of hard choices to make, and there’s a lot of work ahead of me regardless. I suppose to real question, is do I want to have a hand in that work and a choice in how things turn out, or do I wait too long to be able to do this myself and have those choices made FOR me. I’m not too hot on other people deciding my future for me. It’s bad enough this goddamned disease is telling me what’s going to be allowed (not that I’m listening), but to leave everything I DO have a choice about, up to loved ones when it’s too late for me to have a say is pretty much bullshit.

I’ve never just allowed life to happen to me, I’m not about to start now.

But this is a really huge, expensive, work-intensive decision. I have some time, but not a lot, to think about it. At least I’ve already made a profit on the house – it was appraised at more than I locked the offer in. So hooray for that. I guess my first step is to call my realtor and ask for her advice.

But first, apparently, I’m going to whine on the internet about it.