That's me. I was recently fired for having severe narcolepsy. (Irony: The medication that might help with this condition for the first time in my life arrives tomorrow, a few days before our health insurance runs out.) It's been surreal to be excluded from most life aspirations due to being unable to participate in the 9 to 5 that society expects. Part of why it's hard is that no one can relate to this at all. When you throw your back out and are unable to work, people understand. When you arrive at 1pm because you have no memory of waking up and turning off all three of the alarms you'd set, no one cares why. You're damaged goods.
A basic income would at least assist with searching for my next job. My wife and I are now in a situation where we either start receiving income within three months max, or completely run out of money.
I know intellectually what needs to be done: Port a webapp from an older framework to a next-gen framework, then write a detailed post about how it was done and what the benefits were. That would be enough social standing to at least get some freelancing gigs.
Trouble is, I'm completely frozen. It's not quite fear -- closer to profound loss of hope. When a medical condition excludes you from society, it's easy to let it get the better of you, or feel bitter. Those are precisely the opposite feelings that will result in income.
In that light, it's not strange that a $3,000 bill would reduce someone's performance by 40%. Even if it's not a disaster, you end up wishing that you could take your wife on that honeymoon you've talked about for four years. When it took 6 months to save up $3,000 dispite a decently high salary, you know that your future will never be free from the "money problem," and that it will permeate every aspect of your life.
So what do you do? Try to be intelligent, of course. Try to see your situation as amusing. Amusement, yes; anger, no. It's easier to deconstruct a problem when it feels like a puzzle rather than a prison.
Easy to say that. What do I do? Pull up React docs while trying not to cry.
None of my ambitions matter anymore. Life is a years-long process of trying to recover from a tailspin. I'm 28; blink a few times and I'll be 50.
A basic income might help. When the company fired me without notice, they mentioned that our health and dental insurance will expire at the end of the month. This translates into a few things: (a) an extra $350/mo of bills, which accelerates our impending bankruptcy; (b) choose to remove my wisdom teeth and get a root canal right now, this week, which will knock me out for at least two weeks when I have to perform, and will cost at least 15% of our reserves anyway, so I'm not going to do that. Maybe it will result in messed up teeth for life, but that's an abstract problem that Future Me will deal with later.
On the other hand, maybe a basic income would hurt. I don't want handouts. I want to participate in life and to add value to my pursuits, just like you. It's easy to imagine feeling like maybe this basic income should be my lot in life. At least if I know we'll hit a brick wall in 3 months and that my wife won't be able to graduate, I can sort of force myself to try to use React / etc, and to otherwise hustle.
But I miss being 13, when life was an endless intellectual playground, and that "forcing yourself to have fun learning a programming framework" was an absurd contradiction.
Why post this? I don't know. It's not a sob story, and it's not really a warning. It seems like no one else will learn a thing from any of this. But at least it won't seem so mysterious that a $3,000 bill can subvert you.
I didn't choose to be sick. I don't want handouts either. I am very fortunate. But I do think it's a damn shame that health insurance is so tightly coupled with employment when employers come and go but your health follows you everywhere. I can't imagine that a public option would be worse than this.
Why isn't buying a subsidized ACA policy an option?
Either way I had a $2500 out of pocket max on my old plan that I usually met in January. $6k a year in premiums + $2500 out of pocket + some out of network costs is a relatively palatable deal.
Even for software development it's not always reasonable.
EDIT: and while I don't currently have a steady stream of work available, when I do, I favor working with people who for whatever reason have trouble finding or keeping 'normal' work (having dealt with my own share of issues in this area).
I don't see why narcolepsy should be a problem, especially in our area. I mean sure, meetings and stuff like that might be harder to do, but our industry is/should be lenient to things like office hours. There have been tons of times where I go to the office at "late hours" (e.g. 1+ PM), and as long as I turn in my deliverables on time (or let my lead know I won't be able to), there is no issue.
So again, very sorry to hear that.
Also, if I may, I would like to give you the following suggestion.
What about, instead of porting something and then writing about it for the PR, why not take the lowest hanging fruit you can find and do some local web dev/mobile dev, even if you only get a small fraction of the money you need each month.
I am saying this not without reason. I have a friend that is doing bad financially, and doing only one gig that got him around 1k USD (different country and situation of course, but at the current exchange rate, it's about that amount) gave him some hope.
And the thing is that he got a big relief when he saw with his own eyes that he could basically turn code into money. Not enough money necessarily, but at least some amount. That in turn lowered his stress and things started to look less bleak.
Just to tell a bit of his situation: he has kids and a wife that for medical reasons as well, can't work, so he is the sole wage earner at home. His job is very likely going to end soon, and has about 1 month runway.
So just in case you check back the comments, and if you are willing to take some random advice from a random guy on the Internets, why not try this? Just take a gig, very very simple one you can find through friends, your local laundromat/liquor store/etc, family, that consists of doing a simple but sleek-looking webpage or something very low hanging-fruity, and after you get your first few bucks, rinse and repeat.
Hopefully the boost in morale will be enough to get you to try maybe a bigger gig, etc, or at least buy you some time while you get to find another job.
Sorry if this is of no use to you, since I know that this route might not afford you the medical care you need and that definitely sucks. But I truly feel you and I was hoping I could chip in at least a very very minor idea in case it's helpful in any way.
Not sure what else to say except to try to keep going as hard as you can, and that I can definitely lend an ear if you are so inclined (let me know and I can send you an email or something). If not, I sincerely hope things get better soon.
I don't see why narcolepsy should be a problem, especially in our area. I mean sure, meetings and stuff like that might be harder to do, but our industry is/should be lenient to things like office hours.
I've interviewed at I-don't-even-remember-how-many companies that claim to offer extremely flexible hours, or don't care about telecommuting, just make sure you deliver... until you tell them that you can't promise to be there for the daily stand-up at 9am. This is typically justified by "it's only one meeting a day!", but if that one meeting is in the middle of the night for you because you work in a different time zone, or you can't make it in till 10 because you've got kids to take care of, etc., etc.... that doesn't really seem so reasonable anymore.
Congratulations, you have now saved 10 minutes per day for everyone in the office. Oops, now they have to come up with some other reason for everyone to be physically present at 9 AM sharp.
"Flexible hours" have always been BS at almost every company I have worked for.
Basically, kanban, sure; but you've also missed what is (IMO) the main values provided by the "Daily Scrum", and the reason something like it is useful even in systems that use better methods for communicating status of progress items:
1. Coordination and conflict resolution on next tasks, and
2. Early and rapid identification (and, ideally, resolution or escalation) of barriers/issues.
(That's not to say that there aren't ways other than a daily in-person meeting that could be proposed to meet these goals, just that a status board doesn't replace the functionality of the Daily Scrum.)
For the record, I didn't like doing oral reports in front of the entire class in school, either.
Regardless, I hope you are able to recover from this setback and do better than ever. Please don't lose hope - there is always an option.
There is a ton to learn from your story.
Most people think retirement is what you do when you get old. Retirement planning begins on the day you get the first pay check of your life. In fact the whole purpose of working should be to eliminate the need to work.
If you are not doing this already. You are sitting on top of risky avalanche which will go downhill any day.
As some already mentioned, you are likely covered by ADA - if your company is larger than 15 employees.
There are some apps that might help you in this regard that require increasingly complex tasks to disable an alarm. (https://play.google.com/store/apps/details?id=com.kog.alarmc...)
It also has an option to resound the alarm 5min after being disabled.
I have used it and it was effective for me even on 'easy' difficulty challenges, though I don't have a condition like yours, just sort of heavy sleeper. If you haven't, you should definately give it a try.
No. The right dose of the right medications for the individual affected might mitigate the issue, but another person wouldn't solve it any more than puzzle alarms would (which is not at all, essentially.)
> Or is it an even worse condition than I think it is?
It is of varying severity, with various interventions available that may mitigate the effects to a greater or lesser extent for some sufferers, but its a different kind of condition than you seem to think it is. That is, its not like being a non-narcoleptic heavy sleeper except superficially to outside observers, at least, based on what I've read and the narcoleptics I've known.