6 ms·

This came up for me a few years ago when I was filling out a job application. At the voluntary self disclosure stage it listed epilepsy among the list and it st

This came up for me a few years ago when I was filling out a job application. At the voluntary self disclosure stage it listed epilepsy among the list and it stopped me in my tracks. A few brain surgeries later and I'm no longer epileptic, but it did make me ask this exact question. For several years, my onset with in 2012 at age 36, I considered it more of a bummer and inconvenience and never thought about it any other way. Personally I was fortunate that I was only having partial complex seizures which meant that I'd basically space out and stare into the distance completely unattached from my environment for 30 seconds to a few minutes according to my ex-girlfriend and other people I interacted with regularly. Rarely did I have any indication that I'd had a seizure aside from the occasional, unexpected incontinence. One instance that sticks out was walking back from lunch with co-workers when one walked up to me and said "did you lose something". I dropped my sandwich while I was having a seizure and was walking all the while. What allowed me to say "yeah... this is a legit disability" was examining how much had changed in my life without the ability to drive. Luckily I'd just basically moved in with said girlfriend who lived 10 minutes by bus from my job downtown, this was well before I worked from home and there's little chance I could have gotten to work from my rural home an hour away with essentially no transit. I was really living a normal day to day life, I just had to make some adaptations to how I got around and had to stop using power tools without dead man switches. Slightly hyperbolic maybe, but I can make a good case for how epilepsy cost me that house, relationship and severely impinged upon my job search. Hindsight... it's a hell of thing. I don't know that I'd have felt any different being labeled or self-identifying as disabled but it goes a long way to describing the impact it had on my 30s. I'm also a guy that occasionally drove 50k miles in a year to travel for shows and work and various other road trips.

dagmx 6y ago
As a current epileptic (spinal injury, recovered partial paralysis) I still have to deal with the fact that I'm in fact, disabled. Working at a FAANG in silicon valley really highlights that. My commute is 4 hours a day because I have to take public transit, and working late hours is a bigger burden than unaffected people in similar life situations. I'm completely dependent on others to take me places, even for groceries. I dearly miss living in Vancouver where I could just walk anywhere easily and my disability wasn't a daily consideration. But even growing up, it's a difficult disability to rationalize to myself and to others in my life. If people want to go out for drinks, I have to explain why I don't drink since it makes me more likely to have a seizure. When friends go to clubs, I can't go (not that I enjoy it ) and just walking down the street is a crap shoot in case an ambulance or police car go by. I've actually learned to embrace it more as part of my identity and just be up front with people so they know it up front. It's been particularly difficult in my previous career working in entertainment, where so many newer shows and games have adopted strobing as a stylistic choice. Especially with the rise of better LED lighting. So instead I try and raise awareness with my fellow professionals so they can make better decisions to accommodate people like me when making decisions.
- jyriand 6y ago
  4 hours seems like a lot. Do you still have to commute, even amid the pandemic situation?
  - dagmx 6y ago
    No, during the pandemic it's been completely work from home. Which has been great. I've recovered so much of my time back. I can sleep longer etc... And my health is better. The reason for the four hour commute (total.. Not each way), is that my wife works in the Bay as well but in the opposite direction. So we split the distance. Her commute is two hours (hour each way) since she can drive. But it's better to be closer to her place of work since if there's anything that requires us getting back home, she can respond faster (20-30 minutes in non rush hour).
  - kilbuz 6y ago
    Four hours seems like a realistic estimate for daily commute time for a SF <-> SV round-trip pre-COVID, especially on public transit. I did the same, it was 3-3.5 hours by car, and 4 by MUNI/Caltrain/Shuttle. If I lived closer to Caltrain in the city, it would have helped a lot.
    - Red_Leaves_Flyy 6y ago
      I had a 3-4 hour commute on public to my minimum wage job that was a 5 minute drive away. I can't imagine wasting that much time even if I made 2-500k or more a year. What's money without the time to enjoy it?
      - kilbuz 6y ago
        Agree completely, no way to live. It was not sustainable, and only required after my job switched locations. I was working on alternative arrangements, but COVID gave me that.
  - toast0 6y ago
    4 hours a day, 2 hours each way is probably a bus to caltrain, a decent length caltrain ride, and then a bus to the office. Plus idle time at the caltrain stations waiting for the next leg. Plus walking time. Sometimes you're lucky and the bus and train schedules align, but in my experience, the bus schedule will come out, aligning to caltrain, then three weeks later, caltrain adjusts their schedule, and you've got 20 minutes between drop off and pickup again. It's better if you get a corporate shuttle to pick you up from caltrain, but still. Also, if you need to stay later than normal, bus and train service drops in frequency a lot, so you might be waiting even longer. I was just avoiding traffic, so I drove to caltrain, which avoided the waiting on one end.
redis_mlc 6y ago
I had to break it to a teen with epilepsy whose goal in life was to be a pilot, "The FAA medical will reject you, but maybe you can work in an FBO or other aviation business." (He wasn't interested in flying a desk.) In aviation, anything related to loss of consciousness (LoC) is automatically disqualifying. You can get a special issuance for most other health problems (cancer, high blood pressure, sometimes diabetes) but they have to be under control. DUIs are also taken very seriously now. One of the most alarming stories was when a Florida regional jet pilot who drank too much Mountain Dew (caffeine) and had a heart race event, causing him to cancel a flight. FAA medical raked him over the coals with batteries of tests. Don't know if he got his medical back. So don't Red Bull and fly! Note that FAA medical waivers for corona may not apply to insurance requirements: https://www.aopa.org/news-and-media/all-news/2020/march/31/faa-cannot-waive-insurance-requirements https://www.aopa.org/news-and-media/all-news/2020/march/31/f...
- ycombinete 6y ago
  This doesn’t surprise me. I’m not epileptic, but one night under strobes at a club I had a full on tonic-clonic seizure. I hadn’t been drinking, or taken any hard drugs, but I had been consuming a lot of caffeine syrups to study at university that week. Caffeine is a hell of a drug!
  - redis_mlc 6y ago
    I haven't heard of caffeine triggering epilepsy, but yup, here's a link: https://pubmed.ncbi.nlm.nih.gov/29414557/ https://pubmed.ncbi.nlm.nih.gov/29414557/ Good to know. It wasn't reported that the Florida pilot had a seizure, but he too was too jacked up to concentrate on flying. Had it been a seizure, it would be tough get an aviation medical renewed because it can't be proved that LoC won't happen again. Fatigue Countermeasures in Aviation (Mountain Dew Highest Caffeine Content) https://www.asma.org/asma/media/asma/pdf-policy/2009/fatigue-counters.pdf https://www.asma.org/asma/media/asma/pdf-policy/2009/fatigue...
    - ycombinete 6y ago
      So, how I understand it is that our brains have something like a seizing threshold. Which is the amount of stress they can be put under before a seizure is induced. Certain things can lower that threshold. And I think caffeine (or stimulants in general?) and lack of sleep are both things that lower it. So it was the loud music and bright strobe light that triggered the seizure. The caffeine and the lack of sleep lowered my brains resistance to seizing.
hansbo 6y ago
I also had complex partial seizures - borderline, I think, because I retained consciousness, but lost the ability to speak and understand language. I remember going skydiving many years ago, and filling out a form where they asked whether I had disabilities, including epilepsy. I marked that I had epilepsy, and then but the paper at the bottom of the pile. Not sure what they made of it when reading the papers after the fact. I also did a shift in whether I considered it a disability or not. In the beginning, it felt like just a tiny part of who I was. But as time went on, the seizures increasing in frequency, and the anxiety related to the seizures going up as well, it started to make a larger and larger impact on my life and, maybe more importantly, my self-image. I think it is interesting how the same thing can seem so different at different points in time.
ab3rC1te 6y ago
Yep I'm disabled and told past job interviews that I was retarded and ended up not getting the job.

dagmx 6y ago

As a current epileptic (spinal injury, recovered partial paralysis) I still have to deal with the fact that I'm in fact, disabled. Working at a FAANG in silicon valley really highlights that. My commute is 4 hours a day because I have to take public transit, and working late hours is a bigger burden than unaffected people in similar life situations. I'm completely dependent on others to take me places, even for groceries. I dearly miss living in Vancouver where I could just walk anywhere easily and my disability wasn't a daily consideration. But even growing up, it's a difficult disability to rationalize to myself and to others in my life. If people want to go out for drinks, I have to explain why I don't drink since it makes me more likely to have a seizure. When friends go to clubs, I can't go (not that I enjoy it ) and just walking down the street is a crap shoot in case an ambulance or police car go by. I've actually learned to embrace it more as part of my identity and just be up front with people so they know it up front. It's been particularly difficult in my previous career working in entertainment, where so many newer shows and games have adopted strobing as a stylistic choice. Especially with the rise of better LED lighting. So instead I try and raise awareness with my fellow professionals so they can make better decisions to accommodate people like me when making decisions.

jyriand 6y ago
4 hours seems like a lot. Do you still have to commute, even amid the pandemic situation?
- dagmx 6y ago
  No, during the pandemic it's been completely work from home. Which has been great. I've recovered so much of my time back. I can sleep longer etc... And my health is better. The reason for the four hour commute (total.. Not each way), is that my wife works in the Bay as well but in the opposite direction. So we split the distance. Her commute is two hours (hour each way) since she can drive. But it's better to be closer to her place of work since if there's anything that requires us getting back home, she can respond faster (20-30 minutes in non rush hour).
- kilbuz 6y ago
  Four hours seems like a realistic estimate for daily commute time for a SF <-> SV round-trip pre-COVID, especially on public transit. I did the same, it was 3-3.5 hours by car, and 4 by MUNI/Caltrain/Shuttle. If I lived closer to Caltrain in the city, it would have helped a lot.
  - Red_Leaves_Flyy 6y ago
    I had a 3-4 hour commute on public to my minimum wage job that was a 5 minute drive away. I can't imagine wasting that much time even if I made 2-500k or more a year. What's money without the time to enjoy it?
    - kilbuz 6y ago
      Agree completely, no way to live. It was not sustainable, and only required after my job switched locations. I was working on alternative arrangements, but COVID gave me that.
- toast0 6y ago
  4 hours a day, 2 hours each way is probably a bus to caltrain, a decent length caltrain ride, and then a bus to the office. Plus idle time at the caltrain stations waiting for the next leg. Plus walking time. Sometimes you're lucky and the bus and train schedules align, but in my experience, the bus schedule will come out, aligning to caltrain, then three weeks later, caltrain adjusts their schedule, and you've got 20 minutes between drop off and pickup again. It's better if you get a corporate shuttle to pick you up from caltrain, but still. Also, if you need to stay later than normal, bus and train service drops in frequency a lot, so you might be waiting even longer. I was just avoiding traffic, so I drove to caltrain, which avoided the waiting on one end.

redis_mlc 6y ago

I had to break it to a teen with epilepsy whose goal in life was to be a pilot, "The FAA medical will reject you, but maybe you can work in an FBO or other aviation business." (He wasn't interested in flying a desk.) In aviation, anything related to loss of consciousness (LoC) is automatically disqualifying. You can get a special issuance for most other health problems (cancer, high blood pressure, sometimes diabetes) but they have to be under control. DUIs are also taken very seriously now. One of the most alarming stories was when a Florida regional jet pilot who drank too much Mountain Dew (caffeine) and had a heart race event, causing him to cancel a flight. FAA medical raked him over the coals with batteries of tests. Don't know if he got his medical back. So don't Red Bull and fly! Note that FAA medical waivers for corona may not apply to insurance requirements: https://www.aopa.org/news-and-media/all-news/2020/march/31/faa-cannot-waive-insurance-requirements https://www.aopa.org/news-and-media/all-news/2020/march/31/f...

ycombinete 6y ago
This doesn’t surprise me. I’m not epileptic, but one night under strobes at a club I had a full on tonic-clonic seizure. I hadn’t been drinking, or taken any hard drugs, but I had been consuming a lot of caffeine syrups to study at university that week. Caffeine is a hell of a drug!
- redis_mlc 6y ago
  I haven't heard of caffeine triggering epilepsy, but yup, here's a link: https://pubmed.ncbi.nlm.nih.gov/29414557/ https://pubmed.ncbi.nlm.nih.gov/29414557/ Good to know. It wasn't reported that the Florida pilot had a seizure, but he too was too jacked up to concentrate on flying. Had it been a seizure, it would be tough get an aviation medical renewed because it can't be proved that LoC won't happen again. Fatigue Countermeasures in Aviation (Mountain Dew Highest Caffeine Content) https://www.asma.org/asma/media/asma/pdf-policy/2009/fatigue-counters.pdf https://www.asma.org/asma/media/asma/pdf-policy/2009/fatigue...
  - ycombinete 6y ago
    So, how I understand it is that our brains have something like a seizing threshold. Which is the amount of stress they can be put under before a seizure is induced. Certain things can lower that threshold. And I think caffeine (or stimulants in general?) and lack of sleep are both things that lower it. So it was the loud music and bright strobe light that triggered the seizure. The caffeine and the lack of sleep lowered my brains resistance to seizing.

hansbo 6y ago

I also had complex partial seizures - borderline, I think, because I retained consciousness, but lost the ability to speak and understand language. I remember going skydiving many years ago, and filling out a form where they asked whether I had disabilities, including epilepsy. I marked that I had epilepsy, and then but the paper at the bottom of the pile. Not sure what they made of it when reading the papers after the fact. I also did a shift in whether I considered it a disability or not. In the beginning, it felt like just a tiny part of who I was. But as time went on, the seizures increasing in frequency, and the anxiety related to the seizures going up as well, it started to make a larger and larger impact on my life and, maybe more importantly, my self-image. I think it is interesting how the same thing can seem so different at different points in time.

ab3rC1te 6y ago

Yep I'm disabled and told past job interviews that I was retarded and ended up not getting the job.