Resting Easy

April 29, 2016 tragerstreitLeave a comment

It’s really hard to get out of bed.

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

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

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

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

They deliver it Monday. I’m beyond excited.

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

Thank you.

Uncertainty

April 27, 2016April 27, 2016 tragerstreit1 Comment

Having ALS means that life is uncertain. Nothing is guaranteed. Everything changes at a moments notice.

So when formerly stable influences such as friendships and employment are subject to change and you have no control over that, it can seem as though your already tremulous world may collapse at a moment’s notice. Life is already complicated and uncertain, I get that. But when you have ALS, it adds a whole new level of complication to every little thing. Things you never would have considered to be important are suddenly earth shattering and paramount. Temporary inconveniences become lifestyle choices instead. A simple choice becomes a moral dilemma. Every option carries momentous weight.

Intel made the decision to lay off 12,000 people. 11 percent of its entire workforce worldwide. You can get all of the sordid details online by searching for “Intel layoffs” at the Oregonian site, since they have known FAR MORE about all of this than they ought to, well before Intel’s own employees did. (Seriously, they have the details of the layoff packages and everything, when even I don’t have access to that at Intel’s internal sites). (Whoever’s leaking this info is SO FIRED when they’re caught.) Cullings like this have happened before, several times while I was employed there, and MANY times before. Someone higher up gets a Big Idea and all of the minions below pay the price either in blood sweat and tears or a trip to the unemployment line. Big ideas change the world, it’s true, but to the higher-ups it’s numbers in a spreadsheet, not the people I work with every day. Under this new Big Idea, 11% of Intel’s workforce will be “invited” to pursue other opportunities. Some of that came by way of ISP, which is Involuntary Separation Package, a very pretty phrase for getting fired.

They started Monday and continue the rest of this week. We are all nervous. One of us already got walked, a good friend and someone I would have considered crucial to the team. Because he fit into their formula, arbitrary numbers in the spreadsheet. Not real people. No thoughts to the actual contributions this person provides to the team, the company at large, and the projects we’re working on. Unusually for Intel, the people they are choosing to “let go” are being immediately escorted off the premises. They are not being given a chance to hand off their work or tie up loose ends and in most cases, not even allowed to say goodbye. If I am let go, I will at least take great satisfaction knowing that my sudden absence will cause absolute chaos because most of them don’t even know what I do. It’s like that joke, where the husband comes home and finds his house in complete disarray, the children in the backyard eating mud with no clothes on and crying, every light on, and every door open, food spilling out of the fridge; he finds his wife in their bedroom calmly reading a book. He asks in a panic “What happened?!” And she replies, “Well you know how you asked what it is I do all day? Well, today I didn’t do it.”

But if I am fired, let go, offered an ISP, invited to explore new opportunities, whatever flowery words you wish to put upon it, it’s a world of complication. First of all, I’ve never been fired before from anything ever. THAT would probably be devastating on completely new levels. But having ALS, it’s not as simple as I get fired I find a new job. I’m not ready to leave the workforce. I’m still capable of work. I am also not capable of living off of what disability would pay me. Some days I wake up tired, tired to my core, and I think it would be so nice to just stay in bed and not have to deal with work. Maybe ever again. It is getting harder. For instance, I’m actually dictating this post through speech to text, with a program called Dragon Naturally Speaking, because typing is getting hard. For today I am mostly just playing with the program, but I bought it against a future real need. Some days not having to work is a very attractive idea. But the reality is not so attractive; If I get fired I have to make a difficult decision to look for another job or just accept disability and be done with the workforce forever. Both are momentous decisions, both have incredible complications, and both are hard work in their own ways.

If I decide to be done, then I need to bust ass and move out of this apartment that I can’t afford on what disability pays out. I need to rearrange my entire life and put it somewhere else. I lose the daily routine that sometimes keeps me going when nothing else does, and I lose a sense of purpose. It’s really stupid that a huge chunk of your identity is tied up in what you do for a living. Completely stupid. But it happens to be true. Without a job, you get the unemployed stigma, as if somehow you are less of a person because you’re not earning a paycheck. Regardless of the reason you’re not working; you can be independently wealthy, and if you don’t report somewhere to trade your time for money, your thought of as lazy and somehow less. Worse if you’re claiming disability, because now you are burden on society, leeching money from the government, even though you’ve been paying into that account your entire working life. This is money you put aside against this need, but if you have the audacity to claim it, you’re a bum. I have to accept that identity for myself, while trying to figure out how to live on 60% of my former income. Of course I’ll find some volunteer opportunity to fill my time, I can’t go through the rest of my life just sleeping and playing video games, as attractive as that lifestyle seems. I acknowledge I would eventually go crazy with boredom, because how my brain works. Already I have a stupid sense of guilt when I do nothing but play video games and sleep, as if I’m somehow squandering the time I have left. Though, if I didn’t have ALS, I would still totally be sleeping and playing video games. I would lose touch with society, as twisted a version of society that work provides, it still provides interaction with other people. And as introverted as I am, I do need that occasional touch, the presence of other people even if they piss me off, because at our core, humans are social creatures after all. The workplace provides me a safe measured dose of Other People, and I would miss that if I had no work to report to. I once worked from home for three days and I got stupidly lonely. I can of course just… Go outside. Novel concepts. But ALS makes that this Whole Thing, a huge production, and I’m far less likely to do it if I don’t feel I have to. I would become far more withdrawn and reclusive because I have chance to. I would naturally revert to my withdrawn night owl self ends probably never see my friends. And I would sit in my apartments, or house, or whatever and feel completely useless. Because society has trained us to feel useless if we’re not earning a paycheck.

If I decide to search for another job, then I have to somehow convince someone that I am worthwhile, despite being on limited capacity and limited time. I come with MANY many caveats. Of course they are legally obligated to accommodate me, but if another equally qualified, able-bodied person applies for the job, the choice is an obvious one, discrimination laws be damned. “Hi, I’d like a job. I’m really good with organizing things, I have a wonderful ability to get along with anyone, and I have a sharp work ethic. However, I can’t do anything that requires a lot of walking, or carrying anything, or typing fast, or anything fiddly that requires dexterity and strength really. Oh, and I tire pretty easily, and I have no idea how much longer I’ll be able to work in general. That’s not a problem is it?” Yeah. Tough sell. And on top of that, I have to decide if that effort is even worth it. Knowing full well that my ability will decline and my time is limited, how much am I even going to be willing to pour myself into a new job? Things have been rough on my team for a while now, and I haven’t tried to transfer out anywhere even though I know I could, because it’s just too much effort. What is starting a completely new job even going to BE like? I know I am an awesome employee, and I am totally worthwhile, and I am a kick ass person to have in your corner in any circumstance (my LinkedIn profile even says so), but convincing a potential employer of those facts with all of those caveats seems an insurmountable challenge.

There was a third option that Intel provided, that I actually would’ve liked. Intel is also offering VSP, Voluntary Separation Package, which is where they lay you off if you want to be laid off. Supposedly there is no retribution if you decline the opportunity to be laid off, though I can’t say for certain. The offer you a pretty nice little financial package if you decide to move on, weeks or months of pay and a continuation of health care for a time. It would be the most elegant exit for me, with a chance to tie up everything before I go and be allowed that time to make sure everything is taken care of and none of my coworkers are getting screwed over by my absence. I had already scheduled my sabbatical, which is six weeks of paid break (a really awesome benefit Intel provides, actually), to happen in October. A VSP would allow me to wrap up my affairs, take my paid leave as money instead, and then skate on out with a very nice chunk of money while I figured out my disability and Medicare and all of that stuff. So of course, I was not offered one of those. The timing is wonky, I would have wanted a VSP AFTER my sabbatical. Ideally. But beggars as they say, cannot be choosers.

The firings continue all this week. I’m not safe. Being a woman when diversity is in high demand at Intel offers me some security. But no one is ever properly safe. And I am, after all, a lowly technician. On paper. In reality, I own operation of three labs, in Oregon, Chandler Arizona, and Guadalajara. I am the de facto secretary, purchasing, shipping and receiving, space coordinator, self-appointed Morale Officer, the woman who Gets Stuff Done. None of this is reflected in my title. My little spreadsheet cell just says technician. And despite’s reassurances that my yearly review result of “successful” means I’m doing good, the word successful on your focal is one of the criteria they’re using to let people go. So much for successful actually meaning successful. Barely anyone got a rating above successful because they make managers give “successful” to 80% of their people regardless of whether they deserve a promotion or not. 10% get better marks of Outstanding or Exceeds Requirements, with or without a promotion. Before I got my last manager, before the current one, I had NEVER gotten less than Exceeds. 10% get a “requires improvement”. It’s a stupid bell curve. And even though I took on ownership of two more labs, one of them in another country, and did my manager’s job for half of the year, I was not deemed anything more than “successful”. Even though it was roundly acknowledged that I deserve a promotion, but hey – Successful means you’re doing well, right? The man responsible for taking on our most important project, saw it through challenges and difficulties, sacrificed his personal life, and slogged through weeks of long hours in Mexico to make sure this thing even powered on, was deemed “successful”. It’s beyond ridiculous. This man does amazing work, and on paper, in his little excel spreadsheet cell, he is only successful. Which, Intel apparently translates to mean “meh.”

So you can see why morale is incredibly low right now. And I don’t have particular reason to fight to stay.

Any kind of job change is a shift in lifestyle for anyone. With ALS, the complications are tenfold. I have to think and overthink every little possibility. Losing my job isn’t just a temporary inconvenience, it becomes a major life choice. And with each option comes momentous challenges and opportunities and downfalls. Sacrifices that I’m not sure I’m ready to make. I call myself disabled, usually as a joke, but I realize that’s when you can’t even step over a curb you are in fact, DISABLED. But applying for disability, to accept that label from the government, to permanently brand myself as a non-productive member of society, is a huge and heavy thing. Being disabled is one thing, but being Disabled is another altogether. It’s surrender. But I just don’t know if I have fight left in me to try anything else.

I really hope I don’t have to make that decision yet.

I really hate that any of my coworkers are being forced to face this change, even without all of the additional folderol that ALS brings with it. Losing your job really, really, really sucks. It’s hard, it’s demeaning, and it’s complicated. Especially when you didn’t deserve it, it’s just that some Higher Up made a Decision and you happens to fall within the wrong Excel spreadsheet cell.

And even though I am making contingency plans and backups, I hope I don’t have to make this decision. Not now. Hopefully not ever.

But my life depends on a pivot table somewhere. My livelihood rests on a formula I’ll never get to see.

Life is uncertain enough. With ALS even more so.

This sucks and it’s stupid.

Aftermath

April 26, 2016April 26, 2016 tragerstreitLeave a comment

I have been granted the singular privilege to bear witness to her grief.

My friend had her father ripped from this earth, eaten alive by cancer while everyone helplessly stood by. Cancer’s a motherfucker like that. Especially it seems, with men; men of an age too stubborn to admit Something Is Wrong until it’s too late, and pride stops them from accepting all of the treatments, all of the chances. Her father was like my grandfather, that way. My grandfather died of prostate cancer, and had refused potential treatments and surgeries because they’d make him ‘less of a man’ or some bullshit, but he fought on his own terms. It was his decision to make. And her father’s.

He had lived in South Dakota, and she had to return, to disposition his estate. She invited me along, because it’s beautiful there. I said yes, because goddammit someone needed to be there while she walked through her father’s place and went through his things. And because I’d never been. And she needed an ally. I went with her in the mindset to be as helpful as possible, to make this transition as easy as possible, to shield her the best I could from the inevitable shitstorm that happens when someone dies.

We had many, many conversations about grief, over the six days we spent together. I’ve always found, and I’m not alone in this observation, that grief brings out the absolute worst in people. Normally loving and trusting people are suddenly quibbling over who gets grandma’s Jell-O mold, and Brother X is angry that dad only left him $20k, but Brother Y got the house, even though Brother Y moved his whole family and job and world to be close to Dad to help him when he got sick and Brother Y never even called who cares because it should be split equal. Meanwhile Aunt Fran is going through the medicine cabinet and the liquor, and Neighbor Q has claimed that heirloom quilt even though you’ve never met her before she INSISTS that she came over like, ALL THE TIME to help and he said she could have it and starts crying, and they let her have it even though we’re all pretty sure Grandma made it for him when he was sick with measles when he was 12 and maybe she’d like it back, to keep her warm at the nursing home while she mourns the son she somehow outlived.

I have my theory that it’s because of a cosmic sense of entitlement. My one true, real, and serious beef with the Universe, is that it doesn’t stop and let you catch your breath when something horrible happens. So out of nowhere, my grandfather died, and I wasn’t allowed to catch my breath at all, I was suddenly thrown into funeral arrangements and visiting relatives I’d never met, and holy GOD, people can you LEAVE ME ALONE, my GRANDPA just died. And the thing is, they’re going through the same thing. Holy shit, my FATHER just died. My BROTHER just died. And we all walk around with this gaping hole in our souls, and it feels like the goddamned universe owes us something for the incredible injury it just caused. And when the materials are settled, you feel entitled to it all, because Jesus God, that was your GRANDPA. The Universe just took your Grandpa, you deserve that fucking stereo of his, something, a piece of him, a memory of the times you were laughing and frustrated trying to teach him how to USE the thing, and the dance party you had to his old music when he finally got it. And next to you, your uncle is thinking, holy fuck, I just lost my DAD. The universe took my Dad, the LEAST it could do is give me his stereo, that I bought him for Christmas that one year. Everyone is bleeding, mourning, thinking that no one else in the room has the slightest fucking CLUE how badly this hurts.

And they don’t. They can’t. Just as you are blinded to THEIR pain, by yours. Everyone is hollow and aching, and scrambling for what they believe the world owes them. In the process, their grief causes harm, the worst comes out in people, and the ending of a life all too often proves to be the ending of relationships. Arguments over funeral arrangements cost friendships. Dispositioning the estate has torn families apart forever.

I watched this process from the outside, flavoring it with my own experiences, because her father and my grandfather had VERY much in common. It was impossible not to draw parallels. Two very strong, hardworking men, good with their hands, generous to a fault, loving, open hearts, strong faith and strong backs. And very easily taken advantage of by unscrupulous people. It was hard watching her have to be The Bad Guy, because she has no record of ‘gentlemen’s agreements’ and no, she wasn’t about to give up two thirds of a property just because they were friends, and it just didn’t seem to get through peoples’ heads that yes, this all belongs to HER now. They’d lost their friend and felt entitled to things, but she was his DAUGHTER and he entrusted her to take care of his estate.

I helped her go through his things, and decide what to donate, what to throw away, what to keep. It was like tiptoeing through someone else’s life, all at once mundane and profound. You get a secret glimpse into someone’s private life, and it feels like sneaking and prying, though they’re not there to mind it. Dirty dishes still in the sink. Half packs of gum on the kitchen counter. Mundane. A shelf of books, a peek into the sorts of things that entertained him. Profound. Clearing out the bathroom of half-used toiletries. Intimate. A total stranger, putting a dead man’s clothes in a bag for donation. Invasive. Every new thing a question for his daughter, “What would you like done with these?” Overwhelmed.

And through this, I gained incredible insight.

I had gone with the express intention of helping her through some serious shit, and provide happy distractions while she showed me around the very beautiful places, but I wound up with a concrete and valuable reaffirmation of a lesson I had already learned. A solid restatement of something I already knew to my core.

DO NOT PUT OFF SETTLING YOUR FUCKING ESTATE.

WRITE YOUR MOTHERFUCKING WILL.

Decide what you want to do with all of your shit, BEFORE you die.

He didn’t want to think about it, and I don’t blame him, really. In his case, settling his affairs was outright admitting he didn’t believe he could beat cancer. Not at ALL because he didn’t love his daughter and didn’t want to make things easier for her, but just because he was afraid. So even though she asked the hard questions, and he knew he should answer them, he couldn’t. He couldn’t face that fear, that pain, that reality. A friend of mine failed to settle his affairs and left his wife in chaos because he didn’t want to think about it. I haven’t sealed up my things because I am lazy and believe I still have some time. There’s a thousand excuses why not to, but it comes down to, it’s boring and depressing, and you’ve told yourself you’ve got time to think about that.

But maybe you don’t. That’s why NOW is the time to settle your affairs. You need to have a Living Will, at least. Those cost nothing. But you should have a plan, a document that lists who’s in charge of your bank accounts, your online accounts, your healthcare decisions, who gets your shit. You should have that settled NOW, before you know your clock is ticking. Because it still is, even if you don’t hear it right now. Everyone should have a plan for what becomes of them, their things, their feelings should be known. Even 12 year olds. Who gets your diary and your band posters?

I realize, more than you know, that it’s really hard to think about. It sucks. A lot. Your brain goes all staticky because you don’t want to imagine that world you no longer exist in. I believe it is literally impossible for the human brain to fully grasp the concept of your own death. It’s too big an idea for your brain to hold. But you have to make this plan. You have to make your wishes known. You have to write down somewhere, how to access all of your accounts. You have to decide who is going to have to be burdened with making sure your will is known and carried out.

Because the alternative is making your wife collapse into tears because you have so much fucking paperwork to sort through and you never talked about what was important and where your passwords are. The alternative is some shifty relative making off with your sewing machine even though you meant for it to go to your sister, but no one knew that because you never fucking wrote that down anywhere. The alternative is someone accidentally donating that book to Goodwill that you had hollowed out and stored ten thousand dollars in. The alternative is your wayward child completely fucking over her siblings because you didn’t SAY who should settle your estate, and your children are too buried in their grief to care as much as they should. The alternative is causing your loved ones a world of hurt and unfairness, on top of the aching loss of YOU, because you found it too depressing to think about. Only now they’re drowning in that depression, and you’ve left them no handholds.

The alternative is my friend, buried up to her neck in funeral arrangements and memorial services and going through her dead father’s belongings and trying to determine what’s valuable while fending off opportunists. Too busy to allow herself to grieve, unable to let herself fall apart, because her father didn’t want to have those conversations while he lived. And so now she lives in a state of suspended grief, unsure when it will all come crashing in, willing herself to keep it together just a little bit longer. When it’s not fair that she HAS to. This was her FATHER. She loved him with her life. She took care of him in his final moments, and the Universe owes it to her to let her mourn.

But the Universe is not fair, because it doesn’t allow us to catch our breath when something important goes bad.

The Universe is an asshole. You don’t have to be. Do your best to not add insult to injury and get your shit together BEFORE you need to.

Check this out, it’s all wrapped up for you with guides and checklists and shit. I’m even going to put this on the sidebar.

Get Your Shit Together.com

I love you. Get your shit together. And I will, too.

Too private.

April 26, 2016 tragerstreitLeave a comment

“I tend to be pretty private,” she told me, as we talked of grief.

“I keep that close to my chest, usually, too,” I agreed.

“But you’re pretty open, usually? You have that blog.”

“I post a lot of things people would consider private and personal, sure. But when I get really sad about my own situation, I tend to shut up and not post for awhile.”

++++++++++++++++++++++++++++++++++++++++++++++++++

So I haven’t posted for awhile. Not that things haven’t been happening. Things being thought, that I ought to write down. Feelings to document, frustrations to record. Things. But it’s hard to write, when you feel bad. There’s a bullshit self-imposed rule of “if you can’t say anything nice”, when the whole POINT of this was to record the good and bad. The funny among the fucked up, the grace between the grief, the other alliterative things that mean shit happens and sometimes it sucks and it’s all valid and okay.

There’s been a vast lack of energy, both physical and spiritual, lately. I spent the entire weekend in bed. Sleeping or playing video games. Safe to say I’m in a depressive streak, and things are hard right now, but good stuff still happens. I have a lot in my brain. Work is stressful as shit, and that’s its own post, one of many that I feel I owe you, this place, this blog, my future self. One of many. It’s harder to type and that makes me not want to do it. I am tired. I am lazy. I would rather be escaping into virtual realms, the Commonwealth, the biome I call my Minecraft home, Discworld, anywhere but here. I am squandering the time I have left and the ability I have to do things with it, and I can’t bring myself to care, most days.

But I have things to tell you. And I shall. I’m sorry to myself, and to whatever audience here, and to the universe in general for not being a diligent reporter, for not allowing myself permission to post even the bad days, when the bad days aren’t funny. It’s just easier to sleep, instead.

I have things to tell you. And I shall.

Saddiversary

April 11, 2016 tragerstreit3 Comments

*cough* Hi. Um. *taps mic* is this thing still on?

Yeah. Sorry guys. It’s been very nearly a month. I haven’t had much to report, for the most part, and I FREELY admit that I was hiding from everything on April 1st. Diagnosis Day. My second Saddiversary.

Two years ago, I sat in Dr. Goslin’s office and stared at the carpet, nodding slowly, repeating the words, “definitely a motor neuron disease of some kind, and very likely ALS.”

“In a nutshell,” she’d replied.

At the time, my hands were unaffected. I could still stand up without assistance, and walk unaided. I couldn’t stand on my toes, but I could stand on one leg. My breathing was fine, speech was fine. I had periodic muscle twitches, mostly in my thighs, and sometimes harsh cramps in my calves. I could still slowly wiggle my toes, though my mutant ability to wiggle my left pinky toe was gone. I weighed 175 pounds, up from the 160 I’d finally managed to hit when all these troubles started.

I was devastated, of course. No shit, right? But I had a fierce optimism about it all. It didn’t really matter, I knew to my core that I’d be okay; it’s just that OK was going to gain a new definition. Someone else’s broken and busted is someone else’s awesome mobility day. I had amazing people at my back, I had a NAME at last for what was wrong with me,and with that name came a roadmap. As long as I have a name, I can have a loose plan. With good people on my team, and a discovery of a whole organization of people dedicated to help poor bastards like me cope as best as we can for as long as I can, I had this thing in my pocket.

Two years have come and gone, and they’ve taken my ability to stand without assistance. They took my ability to stand on my own without leaning against something. They pretty well chewed up my hands by now. I’m losing the ability to wiggle my fingers independently, which KILLS the joke when I try to make sarcastic air quotes. I no longer type as fast. I no longer fit in my cutest clothes, because I’m now 200 pounds. Still eating and breathing fine, though, so again – the things that will eventually kill me have not yet begun to kill me. They took their toll on my energy levels, which is the second worst part of all of this I think. I can cope with being able to type with difficulty, I can cope with relying on a cane to get around, but doing any of these things just completely WRECK my energy levels for the rest of the day and probably the day after. It’s getting hard to get out of bed both because my energy levels say no, and part because hauling my now 220 pound ass out of the bed is not an easy task. Specially with a cat who just will NOT GET OFF OF YOU but he’s 22 so I have to be super nice and NOT toss him across the room. I fall sometimes, occasionally because I forget I’m not a normal person and can’t multitask walking AND adjusting my backpack. My cats are three obstacle course experts, and they drag their toy obstacles in new configurations every day. To keep me on my toes. Except the little fuckers don’t seem to get that I can no longer stand on my toes, and if I fall, we are ALL gonna regret it.

Those two years have seen some relationship changes, too. Surprisingly, mostly for the better. Amazing people have come out of the woodwork to support me, I hear stories about me that I never would have known, heard the effect I’ve had on people that I never realized. That part’s been awesome. And some people have gone, for many different reasons, mostly that it’s just really fucking HARD to be around someone with a terminal disease. You know the relationship is doomed. It’s difficult to watch someone you care deeply about struggle so much. And THAT is the worst part of having ALS. Watching how it affects those I love.

I watch you watch me struggle, and I feel your helplessness coil off of you in tentacles that hover and sway as you debate coming forward to ask me to let you help. I watch panic burst from your chest like a gunshot wound when you witness me fall, and you bleed in little droplets of ‘what do I do what do I do’ while I assure you that I’m okay, and scan my surroundings for ways to get myself up. You do a little “I wanna step in and help but I don’t know how” cha cha at my side, tentatively reaching down with those useless tentacles, hands offered but of no use to me. “Unless you can deadlift 200 pounds,” I warn, “you’re not going to be any help to me.” I can’t help you help me, you see. It’s not simply a matter of grab my hands and help me to my feet; there are no longer muscles to flex and bend and counter my weight. Getting off the ground is a matter of leverage, I have to find a solid footing and something sturdy and tall like a chair that I can use to wedge my legs into straight lines, and then lift myself off of the chair. My legs are stilts, made of useless skin and fat; the muscles are out back protesting. And so here we are in an incredibly awkward situation in which not only did you have to witness gravity force itself on someone you like, being able to do nothing, but now you have to watch as I humiliate myself by exerting an insane amount of energy to belly up to the chair and lock my legs in position behind me, shakily lifting my body upright, hissing to myself “come the fuck onnnnnnnn just stand up. STAND UP.” and when I get up, swaying and panting,k we are all of us worse for the experience. My humiliation and out of breath sweating will stop, though. You, you never really stop feeling helpless. And I see that knot of internal pressure, maybe it’s rage at the unfairness of the situation, maybe it’s fear that something might happen to you. You have a lot of reasons. Just as I do, watching my friends in situations I can’t control. It’s the worst place to be, and I don’t blame people for realizing they can’t handle it and stop coming around.

Hell, I actually respect you for recognizing your limits and putting your own health and life first. I WANT that for you guys. I appreciate everything you do, and I love you for who you are, and that includes knowing your boundaries, setting them, and keeping them. It’s hard to make those decisions. And keep them.

I’ve..lost track of where this post was going. It’s been two years of actual factual ALS. Life proceeds, as it always does, and so many things have become the new OK. Humans are amazingly adaptable, and I’m still having enough good days to make sticking around worth it. Having the world’s best excuse for not getting out of bed at ALL on a Sunday, nested in cats and blankets, playing video games with no guilt. It’s a recovery day/I woke up with no mana/I just don’t want to Adult today and this “I’m Dying” card says I don’ t have to. Having amazing friends who will bring me dinner, to my bed, because I don’t want to expend the energy to dislodge the cats, pull back the fortress of blankets and pillows, wriggle out of bed, and wall surf to the front door to meet you. And I’m not even dressed.

So that’s pretty much what I did on April Fool Day. Poisson d’Avril. Diagnosis Day. Saddiversary 2: Electric Boogaloo. I hid. And I cried, and I distracted myself with cats and video games, and slept a lot. And then it was okay. I’m still figuring out the new Normal, cause that keeps changing on me.

I really am sorry about being quiet. I do still have things to tell you, and things to show you. I was just being all Emo McCryface for a little bit. I hope you guys are having great days. I love all y’all.

ALS : FTS

Seriously, Fuck This Disease.

Month: April 2016

Resting Easy

Uncertainty

Aftermath

Too private.

Saddiversary