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.