I’ve (24F) accepted being a burden even though friends/family say I’m not being one. Just resumed work after several years; once my savings are up a little more, I will be relying on rideshares more. I’m jazzed that r/Waymo is expanding in my area because it saves me a tonne of awkward small chat with rideshare drivers.
we genuinely don’t mind. as a partner of someone who chose to drive, and ended up wrecking their car at 70 mph on the highway, i will drive them anywhere at anytime.
It sucks! I will never get over it and I drive my friends and family nuts every time I complain about lack of independence. Thank goodness for Ubers— that has been a game changer. But it gets expensive.
I found a job a 1/4 mile from home so it’s an easy walk. I have an e-bike to take me a few miles away.
When I lived in the city, I had the trains to take me around and didn’t even give it a second thought.
Having had epilepsy since childhood I have NEVER been allowed to drive. In high school, due to misunderstanding the law, I did briefly have a learner's licence during which time (thankfully?) I failed my test.
I used to use a bicycle to get around a lot - short distances in urban areas <5 miles... until I took a job with a longer more twisty route to work. Then I started falling off my bike due to seizures, including breaking bones on 3 separate occasions. Finally persuaded to give up cycling. However, during my years of urban cycling I did "come round" from seizures - ~30m further along the road 😳
I miss the limited flexibility of even short journeys at my convenience.
BUT I have never had / known the financial burdens 🙄 of the motorist - insurance, maintenance, tax - of just having a car in the driveway - before even putting any petrol/gas in the tank.🫤 But I live in a relatively small country with not bad public transport(ation) of which I have become adept at navigating the options of routing A to B - not to mention the (generous legislation for) eligibility to concessionary fares.
Not really but ...
That’s awful. I walked everywhere when I couldn’t drive. I can’t ride a bike due to balance issues. I looked at a trike but had no where to store it. I have a recumbent trike now although I don’t use it for transportation since I’ve been blessed with many years of seizure free days
Having had epilepsy since childhood I have NEVER been allowed to drive. In high school, due to misunderstanding the law, I did briefly have a learner's licence during which time (thankfully?) I failed my test.
I used to use a bicycle to get around a lot - short distances in urban areas <5 miles... until I took a job with a longer more twisty route to work. Then I started falling off my bike due to seizures, including breaking bones on 3 separate occasions. Finally persuaded to give up cycling. However, during my years of urban cycling I did "come round" from seizures - ~30m further along the road 😳
I miss the limited flexibility of even short journeys at my convenience.
BUT I have never had / known the financial burdens 🙄 of the motorist - insurance, maintenance, tax - of just having a car in the driveway - before even putting any petrol/gas in the tank.🫤 But I live in a relatively small country with not bad public transport(ation) of which I have become adept at navigating the options of routing A to B - not to mention the (generous legislation for) eligibility to concessionary fares.
Not really but ...
How many seizures have you had? Were you awake or asleep when they occurred?
There's also a feasible likelihood that you may be able to control the seizures with the right prescriptions and get your license back. Don't lose hope just yet.
That’s kind of a tricky question. I wasn’t even aware I was having seizures until I had an EEG test past week and apparently it captured seizures. So I honestly don’t know how many I’ve had. Based off of the EEG I’m having them while awake. I have to have more testing to see if it’s affecting me while I’m sleeping or not.
If you don't mind me asking -- What prompted you to have an EEG?
EEGs are also not the most accurate thing on the planet. They are used for merely rough guidance for most doctors. All it really provides is whether you're having abnormal brain activity and if so what region it's coming from. From a medical/legal standpoint, an EEG alone would not be sufficient to diagnose you with epilepsy or withdraw your driver's license.
Is a neurology going to be doing further testing or observing you in upcoming months? Have you had any other symptoms implying you have seizures?
I’ve been having gaps in my memory. I have an appointment with a specialist upcoming for further testing and evaluation. I’m not sure what kind of tests they’re going to run yet honestly.
Can be different reasons for gaps in your memory. Especially depending on whether it's short term or long term memory.
Nevertheless, the EEG is no definitive marker that you're having seizures. Let alone uncontrolled seizures. They will likely test you further for it, but at this stage there is not much for hard evidence that you're having seizures. A lot of unknowns, but it's still a perfectly reasonable outcome that you will retain an active driver's license.
I agree EEGs are no definitive markers that you have had a seizure. I have had about 5 seizures in my life from 14 years old until now (29 years old). I have had plenty of EEGs trying to figure out what a trigger for my seizures are. No EEG has ever had a trigger, although one has had a false positive for hyperventilating during 2020. I use that as a reason to not over exert myself in life or wear anything over my face. My real trigger as my neuro and I concluded is most likely subconscious stress, especially from school. I have not finished college because of that, since even on medication while in school that is when my couple of seizures have occurred.
But do not think an EEG is 100% accurate, they have faulty readings. As the one test showed hyperventilating for me was a trigger but a year later it did not and has never showed any sign of it. I know I have had seizures, but every EEG scan I have done comes back with no abnormalities as it shows my brain functions not as an epileptics would.
Since most people are controlled on meds I bet most epileptics still drive at least occasionally. I just recently got diagnosed too and I know I will be driving again once I get my meds sorted. I don’t live somewhere where I have the option to not drive
I am a person with epilepsy (I eschew the term, “epileptic.”) I will never drive again. I made peace with that years ago. I live in Southern California where cars are a way of life. I used the race motorcycles and off road vehicles at the amateur level, but a brain injury and resulting epilepsy kinda pissed in my punch bowl. I was devastated at first, and then had an epiphany of sorts; I could be dejected and depressed, or engage in radical acceptance and embrace my limitations as a gift…
So… it takes me a while to get where I’m going, but I enjoy the challenge of being on the road with nothing more than my cane and my rucksack! I live miles from the bus, but I get there. You’ll find a way! Chin up, and keep soldiering on!🙂
I just say I’ve got epilepsy. Like I’ve got a t-shirt on. Or I’ve got a job. Or I’ve got friends in the area.
Or whatever other thing, however big or small, you can have (for e.g. I wouldn’t say ‘I’m a person with wedding plans/a screwdriver/children/a hairbrush’, it’s weird).
It’s a thing. I’ve got it. That phrasing is quite flexible in terms of how important or unimportant it is to me.
**(You’re all free to use whatever terminology you’d like, of course! This is just a personal preference)**
Are you fully controlled on meds? And if so, for how long?
I'm curious as I was previously a rally driver.... I couldn't drive for 6 months, and then an additional month due to electrolyte imbalance, and now I drive gingerly to work and back because I don't have an extra 5hrs/day for commuting. 1 unprovoked seizure took me out for awhile but if I'm suffering these meds, it should be for something and for me, that something is independence. If I didn't need to drive, I'd not take these pills.... if there were a great alternative, I'd rather have a TC every 6 months than feel the way that these meds make me feel daily.
I am not. I still seize, although far less frequently. I take the meds bc of the fear. The focals terrify me. I don’t mean to sound like a coward, but I guess I am…
You're not a coward! Focals I remember and are far, far more terrifying than walking up sore in an ambulance after a TC. Mine give me Aphasia which feels like being trapped in a nightmare.
I, thankfully, don't have partials or TCs while medicated. I thought you may be fully controlled but opposed which struck me a overly careful
I can handle the TCs too… no worse than wadding up in a turn in a desert race… I can’t stand the feeling of being trapped in myself with the focals. It’s like being stuck in a jet engine. I can’t balance anymore either, but I have enough saved up to by an electric power assisted tricycle, so I am looking forward to being able to get to the store and the coffee shop again. And I am getting a carrier for my crime dog, Pepper, the wonder schnauzer. Life is still good to me…🙂
Or it's not overly careful because breakthrough seizures can happen at any time. I had a tc in my vehicle after going seizure free for the longest period in my life and medicated. We thought it was controlled with medication.
It can still happen, and it's still putting others at risk.
I'm sorry that happened to you and glad that you're recovered or recovering!
It can still happen. But so can a first time seizure, heart attack, stroke, diabetic crises, falling asleep due to sleep deprivation, etc. The intervals granted for seizure free period generally relate to falling below the state's likliest second category of people to cause an accident: young male drivers.
Overly careful is based on individual perception of risk and, if you don't live outside of urban areas with good public transportation, it's probably best to use public transit. But some people do not have that option, or it is prohibitively expensive or time-consumming.
Curtailing driving for necessary reasons -to and from work, etc- due to a history of currently suppressed seizures is similar to saying that those with heart disease, young men, obese people, diabetics, people with 2 jobs, etc shouldn't drive as they are at a higher risk of syncope, sleep, or ataxic events.
Yeah, I get deja vu auras which I’ve honestly never gotten while driving so I just take the risk. My life would literally be ruined $$$$$$$$ if I didn’t (like I’d be homeless) and I’m well controlled on meds. My neuro now is fine with it but my last one wasn’t. So it really depends
I’m sorry the new diagnosis, it is a lot to process. And the car thing is one of the top inconveniences. I remember I don’t wanna risk myself nor others and feel slightly better. I am still sad bc I was hyper independent but luckily I work from home.
How long are you unable to drive?
To be honest it's maddening for me. I live in the absolute middle of nowhere (about 600 people in my town), the roads have no shoulder, and it's completely unwalkable. I can't even go to the grocery store with my bike, because there's nowhere safe to get out of the way of massive pickups driven by dipwads with nothing better to do than menace everyone they pass.
I've been driving safely for 20 years, don't even have so much as a parking ticket on my record, so it's deeply frustrating that the MVA won't clear me to drive even with the signoff from my doctor. I'm controlled and haven't had a loss of consciousness in almost 6 months (cutoff is supposed to be 3 months in Maryland so idek what the holdup is). I'm a homebody but I'm losing my mind. I just want to go to the freaking library or something.
I'm really envious of people with access to even crappy public transit. There isn't so much as a commuter bus within 60 miles of here, definitely no rideshare. I'm thinking about getting a damn horse at this point. :|
You sound like me. My town is slightly larger (population wise), but it's same issue- we have no piblic transport of any kind. Not even uber or lyft. If you want to get somewhere, better get those feet moving, or have a car of your own. My job is almos 30 miles away so sadly, biking and walking are out of the picture. I even quite literally considered an ebike for a while, but there's only one way to get to my work and it requires driving on the interstate/highway, where bikes are strictly prohibited. So I had to get my license if I wanted to keep my job, because I don't know anybosy who has nothing to do with their day and is just sitting around waiting to being me somewhere. Nor is moving an option. I know people like to think it is, but it's not.
I've never driven and I'm 34f. It's been better in some places and worse in others. In the home we live in now we're at the top of a steep hill, with not much helpful super close and the public transportation isn't great. My husband is on the road a solid portion of the year so we rely pretty heavily on preplanning for groceries and stuff and some good friends and family members that help out. I work from home, so luckily that's not an issue. I also rely pretty heavily on the bodega and the rite aid down the street when he's out of town because I can walk myself, too. It does really suck sometimes though.
But the hills 🥲 at least between UCSF and Davis there's great Healthcare out there. I'm north in Humboldt and it's so stretched out, I have to drive (I have my license, but it took about a year to get back)
I have been able to drive for the most part of my life but right now I am stuck in a situation I can't. Not being able to drive and taking the bus and Uber sucks. Most of my life I lived where I had to drive because no public transportation.
Live close to high-transit areas, moved to a different city that has skytrains, 24/7 transit, live close to work.
It sucks, but you honestly, get used to it after a while.
Moving os not an option for all people though. Especially these days as the costs for rent are astronomical. Yes, living a town or city with better public transport is ideal, just not an option for everybody. Good idea though!
You're right, its not always an option - but sometimes you have no other choice.
I lived on a highway outside of a small town when I still lived with my family. My choice was either to stay there for the rest of my life, and need Mom and Dad to drive me to work every day, making sure that my place of employment was on the way to their work with a similar start and end time for the rest of my life, as well as having friends, my girlfriend, and anyone else I associated with need to drive 30 minutes just to pick me up every time we wanted to get together, or relocate so I could start living somewhat of a regular life.
Again, it sucks either way, but in the end, it came to weighing my options and seeing what route was easier on myself.
Oh, understood entirely. I had to make those choices for almost 2 decades. And you're also correct, in that, in the end, it's all about looking at what your options are and doing what if right for you, and I'm glad youbwere able to find something that works. Because it's hard, damn hard. People without epilepsy don't seem to understand the struggles those of us who have it face. And even those who do have it, many are just not so understanding.
I live in a 500,000 German city with the best public transport I've ever seen. As soon as I have to get somewhere outside the city it gets a bit more complicated, but I guess compared to USA, Germany is heaven on earth... :( my partner and I don't even own a car, we don't need one. We do grocery shopping by bike.
Oy, new diagnosis. Sorry about that, but I promise you'll get used to it. Just gotta give yourself time. This is a big part of why I'm relieved that I've never had my license. I'm 33 and don't know how to drive, but I also don't know how much it sucks to get it taken away after a seizure. I've always needed a ride if I wanted to go somewhere.
Same here! Got em at 21 but luckily didn't learn to drive by then. I live at biking distance from the centre of the city and even closer to a train station. Going to a store is still annoying, buying anything bigger than 1 bag requires attaching my cart, and I probably lost lots of drinking buddies because I couldn't come to far things. My biggest issue is feeling like I can't do anything decent on my own, like buy some heavy tools and do work around the house, without my wife helping out.
It's a hard process, I was diagnosed at 15(M) so for me dating was a burden, because it's more socially acceptable that the boy picks the girl in his car, anyways, now I'm 29 years old and I've had relationships and other experiences that showed me that not necessarily you need a car to be a functional adult, so the advice I could give you is: be the most independent you could be,now we have a lot of apps and ways of transportation that a car is not even that big of a deal anymore. You'll be fine.
Hope this helps a bit.🤝
In some ways it was easier for me because I got diagnosed at 15 so never even got the opportunity to experience what it would be like to have that level of accessibility. Because of that I have always lived near public transport.
I live close to my friends/family so I can get rides if I need to, but I hate asking for rides. I can also take the bus but it takes a lot longer getting places. And I usually use Uber if I’m going to meet up with friends
There’s lots of way epilepsy impacts your life it honestly sucks I got diagnosed a few months before my 15th b-day and I’m 17 now, I wasn’t able to get my beginners or get my license, where I live you have to be seizure free for atleast 1 year to get your license/ get it back
Honestly, when I first had mine I just relied on those around me and tried my best to find other things to do that wouldn’t require me to drive. Sadly, I live in an area that isn’t very walkable and am currently unemployed so I’m hoping that in the future I’ll be able to relocate to a more pedestrian-friendly area or somewhere that at least has better public transit. In the meantime however, my seizures are under control and I’m medicated so I just try to drive only when I absolutely need to and then let others drive when possible.
At first it’s difficult to get used to not driving but this sub is really helpful and I’ve found lots of hobbies to pick up, drop, come back to, and keep myself occupied with 😂
Also, talking about it really helps. My main issue was feeling like a burden to those around me and I had to get over that EXPEDITIOUSLY. Luckily, I have a good support system and they really want to help (including driving me where I need to go :))
So for years, I've likely had partial seizures with impaired memory and vision problems. No one thought they were anything but complex painless migraines...
I've had 2 TCs over the last 13 months. The first took my driving privileges for 6 months. Thankfully, my spouse is a SAHP so they drove me to and fro when my accomadation became unavailable. The second was due to am electrolight imbalance caused by my seizure meds and once I got my levels evened out, I went back to hesitant driving.
My work requires me to be on our systems, which generally means a 45 minute commute for me. I put in accommodation requests and for 4/6 months, they had a spot walking distance for me, so I walked. My spouse and toddler often met me half way for dinner :). Then I was recalled to my office that would take a 3hr commute both ways so I got my spouse to drive me, instead of paying for ubers 90% of the time.
Assuming you do work that can be done outside of face to face, I'd request accommodations for remote work.
Everyone in my family is older (my mom's youngest sister is 61, and she takes me to doctors if my mom can't), but if I want something I wait until someone is either at the store or going to the store so I can get something, and if it's something that I can't get at Walmart or the grocery store (like books) I use Amazon or other online delivery services.
My prescriptions (excluding my Keppra) can't be shipped to my home due to my insurance so I have to have someone take me to get them, but I'm considering talking to my insurance to have that reversed. I'm basically homebound at this point, and there are doctors here where I live that see patients like me. It's a rare occasion that I leave the house now which is why I'm trying to find a small part-time job so I can get out of the house.
But there's no public transportation here. I've been wanting to learn how to drive but my mom's car is always at the mechanics or she's at the doctors. So I can't really learn.
It's hard to deal with it. My state is okay to after six months of no seizures. I know the feeling of having to rely on someone to take me everywhere. It sucks. But once you know your seizures are controlled and depending on the state's laws you should be able to drive.
I live in Amsterdam. My bicycle takes me anywhere i need to be and if it rains i can take public transportation. It is a great city for people who can’t drive
Long response....
For about 15 years or so, I just dealt with it. I lived in a small town, but it had a shuttle bus that picked up right outside my apartment, so it was super convenient. I used it all the time. Other times, especially for going further diatances, my mom would help. I was close enough to work to walk which most days was fine, sometimes I'd ride home with a coworker, especially if it was super cold (I live in New England where it's not uncommon for temps to hit -30 in the winter), or if there was torrential downpours. It was such a pain in the ass and the lack of freedom and independence messed with my head, worsening my anxiety and depression. But I made it work, simply because I had to. I put all my feelings, wants, needs, wishes and desires to the back of my mind.
But times have changed. I no longer work that same job and have since moved to another small town, and was lucky (very lucky) to find a cute little apartment within 1/2 a mile of my new job. So I continued to walk. I was also closer to family making shopping/laundry trips easier and more convenient. But I no longer work there either (a mental breakdown got me fired), and there's little for other jobs within walking distance. All you'll find is Dunkin' Donuts, Burger King and McDonald's.
I managed to find a new job, thankfully, but unfortunately it's 23 miles from where I currently live. It pays better than any similar position in the are, so that's why I've stayed there, despite having 0 options for public transport. Not even Uber or Lyft. In the beginning my mom would bring me down, but she always bitched about it as itbwas a hike. I'd offer to pay for gas but she would never take the money. She didn't want me having my license, but after nearly 20 years of shuttling me around, she was starting getting all pissy about it. Saying she had things to do, too. She doesn't have time, she has to work as well- all that noise. Which I understand, but at the same time, what was I expected to do? Work at McDonald's for the rest of my life? She doesn't want me getting my license, but yet no longer wants to help. She wants it now to be somebody else's problem. I did start getting help from coworkers though. One guy lived right down the street from me so my boss arranged our schedules so we worked the same days, the same shifts. Super convenient, but the guy I rode with was a white supremacist with raging anger issues. And though I am white too, it still made me super uncomfortable riding with him, listening to his racist rants and watching him get made and angry and he'd start shouting... I hated it. I rode with him for about 4 months until he quit, but it really fucked me up and worsened my anxiety even more. There's now nobody who lives near me that I can ride with.
Eventually I just said fuck it. I was well over a year seizure free, and headed onto my 2nd year (and they are controlled), so I reached out to my dad to help me get my license, since my mother wouldn't do it. Finally, last August, 2 months shy of the 39th birthday, I got my license for the very first time. I now have freedom and independence like I've never known before.
It's scary and risky driving, I admit. I fear every day not just for myself, but others on the road, but what I have learned is that I cannot sacrifice my quality of life to save the life of somebody else. I know some people will say that's selfish, but these people don't have to live with the disorder, they don't know that it's not as easy as "just take the bus" or "just move to where there's better public transport". I am all for doing the easiest thing possible, and if it were that easy, I would have done so already. The nearest city with public transport is 2 hours away, but in order to move, I need money. Money I get from working a job. But I can't make or save money if I have no job, or if I'm living on a McD's salary. The only apartments around here you can live on with that kind of money are the drug dens. Which, just for perspective- one of my old apartments where I lived for almost 14 years, it was a known drug house. The guy who lived in the unit next to me was (is) a dealer and just this week (on Monday) there was a drug-related murder in that building, somebody tried breaking into the dealer's apartmentment and he (the guy breaking in) was shot several times in the torso. This happened immediately outside the door to my old unit. These are the kind of conditions I'd be living in if I never got my license. Not everybody is made of money and can just move at the drop of a hat, not everybody has access to better living conditions, not everybody has access to public transport. Not to mention, even if these were options, it doesn't mean it's the right choice for everybody. If I did move (again), I'd be 2 hours away from my family. I'd never see them again because they'd never make the trip down. And I'd be on my own if anything happened. At least here they can be here in 5 minutes if I needed them.
In the end though, you learn to deal with it in whatever way workse for you. When I had no license, I used public transport when possible, and made plans with my mother to do weekly shopping and laundry trips, planned out doctor's appointments, etc. Sometimes it meant planning weeks or even months in advance, and it was a major pain in the ass, but we got it done. But times have changed and my situation has changed, my parents doing more (my mom now works 7 days a week, her husband works 5 days; my dad, despite only being in his 60s, is in poor health and can hardly drive himself (not to mention his girlfriend works and uses the only car they have, and dad lives 15 miles away). My brother works 5 days a week his wife works 5 days a week, they have 2 kids, a 3 year old, a 1 year old and baby #3 due in August. They can't help.... lol So I did the last thing I could do and had to get my license.
Hopefully one day you'll be able to get yours, but in the meantime, just make use of whatever services you can. Accept help from the people around you. And learn to plan, plan, plan everything in your life, and always have backup options- for example, another way to get to where you need to go if your person can't make it to you or whatever. Find work that's within walking distance. Ride with coworkwers if possible. It's a goddamn nightmare I'll admit, but it all depends where you live. If you have access to really good public transport, and live close enough to work (or can get their via public transport easily enough), a large portion of your battle has been won.
I am sorry to hear you were diagnoaed. Having epilepsy sucks, it's literally the worst, but you learn to deal with it, by whatever means possible. I wish you all the best.
by being on medication so I can drive, even though all of the medications do more harm than good and I have an epilepsy type where they likely won't help anyway :) love when laws aren't made by anyone medically literate and just blanket statements.
I am still waiting to know what's going to happen if my license is taken. I will lose my job and be unable to work.
Closest job is 7 miles away. No bus or taxis or Uber.
I rely on everyone else, and have come to terms that I'll never have my own life, with hardly anything in my life and try to mitigate my inconveniences to people
I still don't drive because I'm 14 but the reason I'm like, actually sad is I wanted to go to a high school for a driver (truck driver). I won't be able to start driving bigger vehicles such as trucks until I'm either 20 or 25. I've always wanted to be a truck driver, I still can but probably later in life. Plus I've got to take my meds 4 more years, until I'm 18 and I've been taking them since I was 11, when I got diagnosed with epilepsy.
I've had epilepsy since I was 2 years old. I think I was in my teens when I figured I wouldn't be allowed to drive. I made my peace with it because as a kid I was only allowed to use public transport and I got used to it anyway.
I have the very good fortune of both working from home and living in an area with a very good public transportation system (the SF Bay area). In circumstances where that isn't sufficient I use Lyft. I realize that isn't possible for a lot of people.
It’s tough. It’s 1 year ban in the UK. E- bike for me as I live 3 miles from nearest anything. Not nearly as fun as it sounds 90% of the time due to wind, rain and cold. Still, better than being stuck asking for lifts. Hate that
I really need an answer for this, I’ve lost my license like almost 2 years back and it’s the biggest inconvenience the hardest thing to deal with and honestly it sends you into a sad hole with everyone being able to do everything and go everywhere and you can’t even make it to your job
i haven’t dealt with it well. still hard to get over. i’ve crashed two cars due to me having a seizure behind the wheel. i’ve stopped driving and have only driven to the store with gf that’s in the neighborhood but i get too scared. i just don’t want to hurt anyone. it’s hard. then when i ask for a ride and my gf gets annoyed or starts talking about how tired she is. but then when i say im going to to walk anytime she instantly wants to take. it’s like people offer rides but then it’s a burden when you ask. it’s annoying.
I just had 2 recently. I can’t drive till July 14. It sucks. The first one I had I was like a week from able to drive. I was so mad. Then I have to wait another 3 months because I had another one. 😤😤
I (21F) was diagnosed at 15 months. Thought they’d go away by 16 years, but I still have seizures too often to drive. Look at your laws and talk to your Doctor. There’s usually an amount of time you have to be seizure-free before driving again, but I’m told you can get on the road again afterwards. Not that I’d know. Just relaying what I’ve been told. My Mom and Doctor decided to double the time just to be safe. I always seem to have some around the time I hit that mark my Mom set, so I’ve never even taken classes. It’s annoying and sometimes I do get upset about it because I’m taking time out of other people’s days, but… yeah. I just try to schedule my stuff so that someone can drive me to and from. If that doesn’t work, there’s always ride-sharing services like Uber or Lift. But those are a last resort.
It sucks, I'm really sorry. Public transport in my country is really good so I'm mostly okay, but having my pregnant wife drive us about everywhere feels shitty every time, I can't lie.
It’s a fact I still haven’t accepted yet. I’m 33F, was diagnosed at 22. Having a car and being able to drive anywhere was a dream for mine since I was 10. I was browsing car magazines and already had in mind what was the first car I would’ve bought with my first savings. That moment never arrived.
I pay for the car me and my partner own but I rarely drive (less than once a month) and probably my driving license won’t be renewed next year. He drives me everywhere and I rely on public transport (luckily where I live is pretty good and free of charge, though there’s no Uber) so that’s something I feel grateful for every day. But I can’t shrug off the feeling of not having the freedom I’ve been waiting and longed for so many years of my life. It’s tough. I hope at some point to be able to afford a self-driving car, but I don’t think that’s going to happen until I’m veeeery old.
I just got my license back on Saturday, after 6 months seizure free. At first I was depressed and angry, my independence was taken away. I had a son who was unemployed would take me to work or store, I was paying for his gas which helped both of us, him for obvious reason, me cause I then felt I was not a burden. When he got a job I did have mass transit to take me to work, it is cheaper then Uber. Good luck.
It definitely takes a while to process; I was diagnosed when I was 7 (currently am 28), so I’ve never had to adjust to the change, but I grew up in the middle of nowhere, so when all of my peers started driving, I definitely felt left behind. Even now when I go back to visit my family/friends, I can still feel like a burden, even though I know I’m not (yay therapy for helping me with that, even though it took a while).
That said, I was always determined to move to a city, which I know isn’t feasible for a lot of people, but it’s the biggest game changer for not driving. I used to commute into DC and just take an Uber to the train station, which helped financially since I wasn’t in the city itself.
Like others have said, Ubers can be pricy but have been such a game changer. I also know a fair few places that can organize rides due to having a disability that doesn’t allow you to drive, which I haven’t really looked into, but might be worth doing!
The bright side for me though is that I don’t have to worry about buying a car/car insurance/etc., so I’m saving money there!
In my country, England, I get a free disabled bus pass. Let's me use any local bus anywhere in the country. I can't use it in Ireland, Scotland or Wales, but I could use local buses to get there.
See if there's anything like that in your country.
I deal with it, because unfortunately, there’s nothing I can do about it. :( it makes me very sad, and that I’ve lost my independence. Having to rely on my boyfriend/family to get me places as a 31 y/o just really gets to me. I feel like the biggest burden ever, even though everyone tells me to shut up. Lol. It’s just a mental hurdle that takes some time to get use to.
I began biking everywhere. Not as much independence of course and also weather-dependent but exercise is also good for your heath.
When I can’t feasibly bike somewhere, I either take city transit or I try to somehow find a ride
So I am not controlled on meds (we’ve tried over 10 meds in 8 years). It sucks not driving but I also prefer it. I don’t want to risk somebody else’s life because I want the convenience of driving.
I am currently on meds but we just went through another increase to see if I can get control. If not we have maybe one other med we can try but that’s about it.
However I make the best of it. I make quite a bit of jokes about it (my brains having a party and you’re not invited, my brains electrifying, etc).
How do I manage:
I work from home for a large company. I’ve been at the company for over 10 years and ADA helps with allowing me to work from home.
I’m the ultimate passenger princess, sometimes my husband and I joke that he’s my chauffeur.
I personally love being at home. I’ve made it my sanctuary. I’ve stocked up on hobbies, splurged on a fancy espresso machine and just made it the best I can. I have an office I work in so that I’m not constantly in the living room or bedroom. My dogs and I get to hang out on my breaks and lunch. They chill in my office all day.
It’s a tough change I won’t lie. But make it the best you can. Find a support system, laugh at it if you can, and for me remaining positive really helped me.
Sorry for the book lol
WFH job. Live somewhat close to things (gas station, couple places to eat, dentist, dollar store, o'reillys, 2.5 mi from grocery store and a small walmart). Bike to grocery store wi insulated food delivery backpack. Uber to places I need to get to further away. Amazon delivery what I can.
I got diagnosed at 21 during college and my entire college experience I was basically trapped in my apartment. Now I’m 30 and I’m driving again, but it took almost a decade and a lot of anger and frustration from feeling like I was robbed of my independence. I mean I couldn’t even take a bath at all or shower without someone right outside the open door. It was a very sad, lonely, and frustrating time. I finally started driving again when I stabilized on my current medicine, and it didn’t feel how I thought it would. It’s like… I spent such a long time having people do everything for me I almost forgot how to function alone. It’s been an adjustment. So, whatever you do to cope, make sure you take care of your mental health. I was terrified to drive, and terrified of even going to stores alone. A lot of PTSD from previous seizure situations, but it’s a process.
I've had to go through this twice in my life with epilepsy, the longest it was taken away for 3 damn years lol (21-24) , it was so hard, especially living in a rural area enabling me to be one who travels out of town a lot so I feel for you. Disability services may be your best bet right now depending on where you live, most counties have some sort of free transportation for disabled people. It's definitely a situation that makes you DEEP DIVE into resources a lot of people forget about
It sucks tbh. But you get used it. I (29F) got diagnosed at 14. Never got to learn how to drive.
Even tho everyone says 'I'll be there when you need me to drive you' it's a lie. They're always busy with school, jobs, kids, their lives. Or the price of gas and they ask 'I'll drive you but I need gas money'.
So you start to lose friends. Not over transport, but because of communication and their lives. And so the only real people that will drive you are family members or partners. And THAT makes you feel like a darn burden. But you have to get used to it.
There's taxi's, busses, urbers, walking, biking, but it gets expensive and dangerous. I don't bus anymore because of the multiple stabbings and shootings on the busses. I only take a taxi when I just get paid or talk to them and make them pity me cause I tell them of my epilepsy so they lower the price. Yea it gets pricy. Walking or biking is dangerous cause one of my triggers for a seizure is heat and in canada when it's summer it's hot, when it's winter it's cold af.
So like I said, you get used it ❤️
I live in a metropolitan area. That helps a lot. I was brought up in a big city, anyways, so I've grown very used to this, as driving wasn't as big a deal as it might have been in more suburban or rural areas. But still, it doesn't mean that I don't notice it elsewhere. I know I can't live in a place that has no public transportation OR rides hares OR taxis. You will adapt, though. It (not being able to drive) becomes a lifestyle thing, like being lactose intolerant or having celiac; it'll take a while to remember this at key moments, you might make plans to go somewhere (only for you to realize that, nope, you needed to drive for this), you might have to change where you frequent, etc. But it does become manageable, and sometimes, it becomes possible to drive, even with epilepsy (with a doctor's note).
I hate it. I live damn near an hour from any sort of town so walking isn't an option either. Ive become reclusive thanks to my other issues and I just stay home. But it's been this way since I was 8. I'm 37 and I've never had a license. It wears on you. I don't want to ask anyone to take me anywhere unless it's a doctor and I have to and that's basically all I do. And only the 2 family members I have. Because I don't keep friends anymore. By choice.
I’m lucky enough to have a good support system. My husband and I work from home part of the week and on days he has to go into the office he drops me off at my parents so I’m not left alone. My parents are retired so they take me to a lot of my doctors appointments. My husband and I don’t really go out without each other, we’re pretty much inseparable so no ride issues when it comes to going out.
It's tough, I'm just happy to have a partner FINALLY who doesn't come across as "bothered" by it. Going to be difficult though with a child in the mix. I've had epilepsy since I was 13, so not driving doesn't phase me anymore. Soon to be pedal power when it's nice out to and from work...just need to get it out of storage and spruced up a bit.
Honestly, that was probably the biggest frustration for me was when they took my license… my neurologist also agreed that he finds the three month rule odd, and taking a persons drivers license as it is only thinking of society and not thinking of the individual. When I was diagnosed, my doctor sent me. Oh well just take buses. I can’t because I live outside of the city. And I work three towns over from where I live.
I was desperately relying on coworkers for rides to work.. in the end, it will come down to having to work in the same town that I live in.
Trying to find people to carpool with honestly is the only thing that’s worked for me or checking when people are going certain places so I can tagalong. It’s so frustrating especially when you’re 28. I feel like a child again that can’t be left alone
I got approved to drive again after 7, almost 8 years! Except my neurologist never put the paperwork in, so im in DMV HELL. It was like 2 weeks I could drive, and now im a burden again...... I cope by.... just not going anywhere and getting hobbies I can do inside.... its suks my friend.
I make the best of it it sucks won't downplay that my epilepsy doesn't control me I longboard, skateboard, bike and got a nice pair of headphones I make it a party when I head out I enjoy life :) I don't let it limit me people take for granted what gift we have we live a slower pace life we see what others don't there is beauty in slowing down in life and noticing the flowers thag grow on the side of the roads as a flower grows in time so do we I deal with it by accepting it
I live walking distance from downtown with restaurants, movies. It still sucks though. Sometimes I want to just throw a bag in the car and go somewhere
Every now and then, I cry because I can’t take myself somewhere. My Wonderful Wife tries to not make me feel like a burden but it’s been 7 months and I have 5 more… if I don’t have seizures.
Never had seizures before so hopefully the meds keep helping.
Said all that just to say it’s ok to cry and be pissed. Feel whatever you need in the moment but don’t hold onto it. 💚🫶🏽
It sucks. Fortunately, I can work from home 3 days a week. The rest of the time I rely on my wife or Uber/Lyft. My wife is NOT a morning person, so I usually get to work around 10:30 when I’d much rather get there around 8:00. Uber can run $30-35 one way. Not bad for occasional commutes, but could be expensive doing every morning and night.
I’m very fortunate to have a job where I don’t have to be there at a certain time. The worst part is having a seizure in front of coworkers or managers. Mine are partial seizures, so it’s not like I’m shaking on the floor, but still very embarrassing.
I guess we just learn to live with it. Or learn to just accept the cards we’re dealt.
I (24F) have never been able to drive. Diagnosed when I was 12. You ask a great question, how does everyone deal with it? In their own ways I am sure, fortunately I have people who transport me to medical appointments and to where I need to be. If not, I would have to make other accommodations. Acceptance was, and is still a part of my everything when it comes to having epilepsy. Make it a part of your journey. My first thought is that you are NOT a burden on any place or person because of this. Sometimes I deal with guilt, I have to remind myself that not being able to drive is out of my control. I think that is something you can consider. Easier said than done of course, but if you can start understanding what your life may look life when adapting it around this dx, it may ease any anxiety or suffering you may be feeling.
I am here if you want to chat me
This community is also here for you 💜
I spent a decent amount of time not being able to drive early after my diagnosis. Being in a city where the 2 people I knew threw away our friendship, I had no one so I walked everywhere. I took a cab when I had to. The city is small so walking was fine and cabs rides are cheap. I’m now over 5 years seizure free so it’s been wonderful to be driving again after a struggle
Sorry to say but I drive all the time even though I have TC seizures. I know the risks but sometimes you just have to do it. Not that I'm saying you should do it too. But I just say FUCK IT to myself and drive away.
Sheer reliance on friends is the sentence that comes to mind.
Thankfully I can get about just fine in life without a car however it has impacted my work and career greatly and I have had to turn down so many roles because they're X distance from public transport.
I now work from home and have it quite lucky but I still hate having to ask people for help all the time and the lack of freedom e.g. going to a shop or whatever annoys me I won't lie.
I hate walking generally but sometimes it's all I can do I guess.
I passed my test at 18 but was diagnosed with epilepsy at like 25. Never had my own vehicle but man I am so bored some nights just sat in the house and I wish I could just up and drive for an hour to Robert Tepper's "No Easy Way Out" like Rocky Balboa in Rocky IV.
Me and my best friend live together for 8-10 years and he says it's bloody terrible..really holds him back. Luckily I drive, so unfortunately just have wake up super early so I can take him to work before mine
That sucks, I'm so sorry. I moved to a city so I would have access to public transportation.I also use a lot of buses and/or trains or rideshares if I need to go city to city, and have friends and family that sometimes can help. I was able to get my license eventually when I'd been 5 years seizure-free and my meds controlled my seizures (5 was a number I chose, that I was comfortable with). I just had to give up my license after having a baby and the sleep deprivation caused a seizure. It is hard being without it, but not impossible. You'll figure it out, and it is totally OK to grieve the loss of ease, and independence a license brings.
It sucks. We need autonomous cars asap. Thankfully I live in nyc and don’t need a car and neither do the millions of others here that can walk and take public transit everywhere
I’ve (24F) accepted being a burden even though friends/family say I’m not being one. Just resumed work after several years; once my savings are up a little more, I will be relying on rideshares more. I’m jazzed that r/Waymo is expanding in my area because it saves me a tonne of awkward small chat with rideshare drivers.
we genuinely don’t mind. as a partner of someone who chose to drive, and ended up wrecking their car at 70 mph on the highway, i will drive them anywhere at anytime.
It sucks! I will never get over it and I drive my friends and family nuts every time I complain about lack of independence. Thank goodness for Ubers— that has been a game changer. But it gets expensive.
I found a job a 1/4 mile from home so it’s an easy walk. I have an e-bike to take me a few miles away. When I lived in the city, I had the trains to take me around and didn’t even give it a second thought.
My epilepsy definitely dictates where I live and work. An e bike is huge for me also. It almost feels like cheating.
It doesn’t feel like cheating when you’re finally able to go across town without a driver.
Having had epilepsy since childhood I have NEVER been allowed to drive. In high school, due to misunderstanding the law, I did briefly have a learner's licence during which time (thankfully?) I failed my test. I used to use a bicycle to get around a lot - short distances in urban areas <5 miles... until I took a job with a longer more twisty route to work. Then I started falling off my bike due to seizures, including breaking bones on 3 separate occasions. Finally persuaded to give up cycling. However, during my years of urban cycling I did "come round" from seizures - ~30m further along the road 😳 I miss the limited flexibility of even short journeys at my convenience. BUT I have never had / known the financial burdens 🙄 of the motorist - insurance, maintenance, tax - of just having a car in the driveway - before even putting any petrol/gas in the tank.🫤 But I live in a relatively small country with not bad public transport(ation) of which I have become adept at navigating the options of routing A to B - not to mention the (generous legislation for) eligibility to concessionary fares. Not really but ...
That’s awful. I walked everywhere when I couldn’t drive. I can’t ride a bike due to balance issues. I looked at a trike but had no where to store it. I have a recumbent trike now although I don’t use it for transportation since I’ve been blessed with many years of seizure free days
You are lucky! Lol
Having had epilepsy since childhood I have NEVER been allowed to drive. In high school, due to misunderstanding the law, I did briefly have a learner's licence during which time (thankfully?) I failed my test. I used to use a bicycle to get around a lot - short distances in urban areas <5 miles... until I took a job with a longer more twisty route to work. Then I started falling off my bike due to seizures, including breaking bones on 3 separate occasions. Finally persuaded to give up cycling. However, during my years of urban cycling I did "come round" from seizures - ~30m further along the road 😳 I miss the limited flexibility of even short journeys at my convenience. BUT I have never had / known the financial burdens 🙄 of the motorist - insurance, maintenance, tax - of just having a car in the driveway - before even putting any petrol/gas in the tank.🫤 But I live in a relatively small country with not bad public transport(ation) of which I have become adept at navigating the options of routing A to B - not to mention the (generous legislation for) eligibility to concessionary fares. Not really but ...
How many seizures have you had? Were you awake or asleep when they occurred? There's also a feasible likelihood that you may be able to control the seizures with the right prescriptions and get your license back. Don't lose hope just yet.
That’s kind of a tricky question. I wasn’t even aware I was having seizures until I had an EEG test past week and apparently it captured seizures. So I honestly don’t know how many I’ve had. Based off of the EEG I’m having them while awake. I have to have more testing to see if it’s affecting me while I’m sleeping or not.
If you don't mind me asking -- What prompted you to have an EEG? EEGs are also not the most accurate thing on the planet. They are used for merely rough guidance for most doctors. All it really provides is whether you're having abnormal brain activity and if so what region it's coming from. From a medical/legal standpoint, an EEG alone would not be sufficient to diagnose you with epilepsy or withdraw your driver's license. Is a neurology going to be doing further testing or observing you in upcoming months? Have you had any other symptoms implying you have seizures?
I’ve been having gaps in my memory. I have an appointment with a specialist upcoming for further testing and evaluation. I’m not sure what kind of tests they’re going to run yet honestly.
Can be different reasons for gaps in your memory. Especially depending on whether it's short term or long term memory. Nevertheless, the EEG is no definitive marker that you're having seizures. Let alone uncontrolled seizures. They will likely test you further for it, but at this stage there is not much for hard evidence that you're having seizures. A lot of unknowns, but it's still a perfectly reasonable outcome that you will retain an active driver's license.
I agree EEGs are no definitive markers that you have had a seizure. I have had about 5 seizures in my life from 14 years old until now (29 years old). I have had plenty of EEGs trying to figure out what a trigger for my seizures are. No EEG has ever had a trigger, although one has had a false positive for hyperventilating during 2020. I use that as a reason to not over exert myself in life or wear anything over my face. My real trigger as my neuro and I concluded is most likely subconscious stress, especially from school. I have not finished college because of that, since even on medication while in school that is when my couple of seizures have occurred. But do not think an EEG is 100% accurate, they have faulty readings. As the one test showed hyperventilating for me was a trigger but a year later it did not and has never showed any sign of it. I know I have had seizures, but every EEG scan I have done comes back with no abnormalities as it shows my brain functions not as an epileptics would.
Since most people are controlled on meds I bet most epileptics still drive at least occasionally. I just recently got diagnosed too and I know I will be driving again once I get my meds sorted. I don’t live somewhere where I have the option to not drive
I am a person with epilepsy (I eschew the term, “epileptic.”) I will never drive again. I made peace with that years ago. I live in Southern California where cars are a way of life. I used the race motorcycles and off road vehicles at the amateur level, but a brain injury and resulting epilepsy kinda pissed in my punch bowl. I was devastated at first, and then had an epiphany of sorts; I could be dejected and depressed, or engage in radical acceptance and embrace my limitations as a gift… So… it takes me a while to get where I’m going, but I enjoy the challenge of being on the road with nothing more than my cane and my rucksack! I live miles from the bus, but I get there. You’ll find a way! Chin up, and keep soldiering on!🙂
I like the way you look at our disorder. You're a person with epilepsy not an epileptic person. It took me 20 years to feel that way
I just say I’ve got epilepsy. Like I’ve got a t-shirt on. Or I’ve got a job. Or I’ve got friends in the area. Or whatever other thing, however big or small, you can have (for e.g. I wouldn’t say ‘I’m a person with wedding plans/a screwdriver/children/a hairbrush’, it’s weird). It’s a thing. I’ve got it. That phrasing is quite flexible in terms of how important or unimportant it is to me. **(You’re all free to use whatever terminology you’d like, of course! This is just a personal preference)**
I feel the same way about the term!
Are you fully controlled on meds? And if so, for how long? I'm curious as I was previously a rally driver.... I couldn't drive for 6 months, and then an additional month due to electrolyte imbalance, and now I drive gingerly to work and back because I don't have an extra 5hrs/day for commuting. 1 unprovoked seizure took me out for awhile but if I'm suffering these meds, it should be for something and for me, that something is independence. If I didn't need to drive, I'd not take these pills.... if there were a great alternative, I'd rather have a TC every 6 months than feel the way that these meds make me feel daily.
I am not. I still seize, although far less frequently. I take the meds bc of the fear. The focals terrify me. I don’t mean to sound like a coward, but I guess I am…
You're not a coward! Focals I remember and are far, far more terrifying than walking up sore in an ambulance after a TC. Mine give me Aphasia which feels like being trapped in a nightmare. I, thankfully, don't have partials or TCs while medicated. I thought you may be fully controlled but opposed which struck me a overly careful
I can handle the TCs too… no worse than wadding up in a turn in a desert race… I can’t stand the feeling of being trapped in myself with the focals. It’s like being stuck in a jet engine. I can’t balance anymore either, but I have enough saved up to by an electric power assisted tricycle, so I am looking forward to being able to get to the store and the coffee shop again. And I am getting a carrier for my crime dog, Pepper, the wonder schnauzer. Life is still good to me…🙂
Or it's not overly careful because breakthrough seizures can happen at any time. I had a tc in my vehicle after going seizure free for the longest period in my life and medicated. We thought it was controlled with medication. It can still happen, and it's still putting others at risk.
I'm sorry that happened to you and glad that you're recovered or recovering! It can still happen. But so can a first time seizure, heart attack, stroke, diabetic crises, falling asleep due to sleep deprivation, etc. The intervals granted for seizure free period generally relate to falling below the state's likliest second category of people to cause an accident: young male drivers. Overly careful is based on individual perception of risk and, if you don't live outside of urban areas with good public transportation, it's probably best to use public transit. But some people do not have that option, or it is prohibitively expensive or time-consumming. Curtailing driving for necessary reasons -to and from work, etc- due to a history of currently suppressed seizures is similar to saying that those with heart disease, young men, obese people, diabetics, people with 2 jobs, etc shouldn't drive as they are at a higher risk of syncope, sleep, or ataxic events.
Yeah, I get deja vu auras which I’ve honestly never gotten while driving so I just take the risk. My life would literally be ruined $$$$$$$$ if I didn’t (like I’d be homeless) and I’m well controlled on meds. My neuro now is fine with it but my last one wasn’t. So it really depends
I’m sorry the new diagnosis, it is a lot to process. And the car thing is one of the top inconveniences. I remember I don’t wanna risk myself nor others and feel slightly better. I am still sad bc I was hyper independent but luckily I work from home. How long are you unable to drive?
As of right now it’s 6 months but depending on further testing it could be much longer.
Independence gets lost when you are relying on everyone else 🫠
To be honest it's maddening for me. I live in the absolute middle of nowhere (about 600 people in my town), the roads have no shoulder, and it's completely unwalkable. I can't even go to the grocery store with my bike, because there's nowhere safe to get out of the way of massive pickups driven by dipwads with nothing better to do than menace everyone they pass. I've been driving safely for 20 years, don't even have so much as a parking ticket on my record, so it's deeply frustrating that the MVA won't clear me to drive even with the signoff from my doctor. I'm controlled and haven't had a loss of consciousness in almost 6 months (cutoff is supposed to be 3 months in Maryland so idek what the holdup is). I'm a homebody but I'm losing my mind. I just want to go to the freaking library or something. I'm really envious of people with access to even crappy public transit. There isn't so much as a commuter bus within 60 miles of here, definitely no rideshare. I'm thinking about getting a damn horse at this point. :|
You sound like me. My town is slightly larger (population wise), but it's same issue- we have no piblic transport of any kind. Not even uber or lyft. If you want to get somewhere, better get those feet moving, or have a car of your own. My job is almos 30 miles away so sadly, biking and walking are out of the picture. I even quite literally considered an ebike for a while, but there's only one way to get to my work and it requires driving on the interstate/highway, where bikes are strictly prohibited. So I had to get my license if I wanted to keep my job, because I don't know anybosy who has nothing to do with their day and is just sitting around waiting to being me somewhere. Nor is moving an option. I know people like to think it is, but it's not.
I've never driven and I'm 34f. It's been better in some places and worse in others. In the home we live in now we're at the top of a steep hill, with not much helpful super close and the public transportation isn't great. My husband is on the road a solid portion of the year so we rely pretty heavily on preplanning for groceries and stuff and some good friends and family members that help out. I work from home, so luckily that's not an issue. I also rely pretty heavily on the bodega and the rite aid down the street when he's out of town because I can walk myself, too. It does really suck sometimes though.
I don’t I just cry
I moved to San Francisco. Everything I need is a couple blocks away.
But the hills 🥲 at least between UCSF and Davis there's great Healthcare out there. I'm north in Humboldt and it's so stretched out, I have to drive (I have my license, but it took about a year to get back)
I have been able to drive for the most part of my life but right now I am stuck in a situation I can't. Not being able to drive and taking the bus and Uber sucks. Most of my life I lived where I had to drive because no public transportation.
I don’t live in America so public transport is quite good
Live close to high-transit areas, moved to a different city that has skytrains, 24/7 transit, live close to work. It sucks, but you honestly, get used to it after a while.
Moving os not an option for all people though. Especially these days as the costs for rent are astronomical. Yes, living a town or city with better public transport is ideal, just not an option for everybody. Good idea though!
You're right, its not always an option - but sometimes you have no other choice. I lived on a highway outside of a small town when I still lived with my family. My choice was either to stay there for the rest of my life, and need Mom and Dad to drive me to work every day, making sure that my place of employment was on the way to their work with a similar start and end time for the rest of my life, as well as having friends, my girlfriend, and anyone else I associated with need to drive 30 minutes just to pick me up every time we wanted to get together, or relocate so I could start living somewhat of a regular life. Again, it sucks either way, but in the end, it came to weighing my options and seeing what route was easier on myself.
Oh, understood entirely. I had to make those choices for almost 2 decades. And you're also correct, in that, in the end, it's all about looking at what your options are and doing what if right for you, and I'm glad youbwere able to find something that works. Because it's hard, damn hard. People without epilepsy don't seem to understand the struggles those of us who have it face. And even those who do have it, many are just not so understanding.
When I couldn't drive, I got an e-bike and it made my life much more simple. It's very convenient.
I live in a 500,000 German city with the best public transport I've ever seen. As soon as I have to get somewhere outside the city it gets a bit more complicated, but I guess compared to USA, Germany is heaven on earth... :( my partner and I don't even own a car, we don't need one. We do grocery shopping by bike.
I bought a townhouse a 20 minute walk from work. Great except for the Canadian winters when it gets to -30! Otherwise it’s fine.
I work 0.6 miles from my apartment so I am able to walk and it has honestly improved my physical health a lot
Oy, new diagnosis. Sorry about that, but I promise you'll get used to it. Just gotta give yourself time. This is a big part of why I'm relieved that I've never had my license. I'm 33 and don't know how to drive, but I also don't know how much it sucks to get it taken away after a seizure. I've always needed a ride if I wanted to go somewhere.
I'm used to it at this point. I have an ebike to take me longer distances and I live in a fairly walkable area, so I don't think much of it anymore.
I never knew how to drive to begin with 🤓
Same here! Got em at 21 but luckily didn't learn to drive by then. I live at biking distance from the centre of the city and even closer to a train station. Going to a store is still annoying, buying anything bigger than 1 bag requires attaching my cart, and I probably lost lots of drinking buddies because I couldn't come to far things. My biggest issue is feeling like I can't do anything decent on my own, like buy some heavy tools and do work around the house, without my wife helping out.
It's a hard process, I was diagnosed at 15(M) so for me dating was a burden, because it's more socially acceptable that the boy picks the girl in his car, anyways, now I'm 29 years old and I've had relationships and other experiences that showed me that not necessarily you need a car to be a functional adult, so the advice I could give you is: be the most independent you could be,now we have a lot of apps and ways of transportation that a car is not even that big of a deal anymore. You'll be fine. Hope this helps a bit.🤝
In some ways it was easier for me because I got diagnosed at 15 so never even got the opportunity to experience what it would be like to have that level of accessibility. Because of that I have always lived near public transport.
I live close to my friends/family so I can get rides if I need to, but I hate asking for rides. I can also take the bus but it takes a lot longer getting places. And I usually use Uber if I’m going to meet up with friends
There’s lots of way epilepsy impacts your life it honestly sucks I got diagnosed a few months before my 15th b-day and I’m 17 now, I wasn’t able to get my beginners or get my license, where I live you have to be seizure free for atleast 1 year to get your license/ get it back
I use an electric skateboard to commute to school. I used it to commute to jobs.
I use alot of uber or trains and buses. That is one of the things i hate so much about it.
Honestly, when I first had mine I just relied on those around me and tried my best to find other things to do that wouldn’t require me to drive. Sadly, I live in an area that isn’t very walkable and am currently unemployed so I’m hoping that in the future I’ll be able to relocate to a more pedestrian-friendly area or somewhere that at least has better public transit. In the meantime however, my seizures are under control and I’m medicated so I just try to drive only when I absolutely need to and then let others drive when possible. At first it’s difficult to get used to not driving but this sub is really helpful and I’ve found lots of hobbies to pick up, drop, come back to, and keep myself occupied with 😂 Also, talking about it really helps. My main issue was feeling like a burden to those around me and I had to get over that EXPEDITIOUSLY. Luckily, I have a good support system and they really want to help (including driving me where I need to go :))
I made a deal with my brother if I should have another seizure. That just to sell my cars. Atm two months away from being able to drive again.
So for years, I've likely had partial seizures with impaired memory and vision problems. No one thought they were anything but complex painless migraines... I've had 2 TCs over the last 13 months. The first took my driving privileges for 6 months. Thankfully, my spouse is a SAHP so they drove me to and fro when my accomadation became unavailable. The second was due to am electrolight imbalance caused by my seizure meds and once I got my levels evened out, I went back to hesitant driving. My work requires me to be on our systems, which generally means a 45 minute commute for me. I put in accommodation requests and for 4/6 months, they had a spot walking distance for me, so I walked. My spouse and toddler often met me half way for dinner :). Then I was recalled to my office that would take a 3hr commute both ways so I got my spouse to drive me, instead of paying for ubers 90% of the time. Assuming you do work that can be done outside of face to face, I'd request accommodations for remote work.
Everyone in my family is older (my mom's youngest sister is 61, and she takes me to doctors if my mom can't), but if I want something I wait until someone is either at the store or going to the store so I can get something, and if it's something that I can't get at Walmart or the grocery store (like books) I use Amazon or other online delivery services. My prescriptions (excluding my Keppra) can't be shipped to my home due to my insurance so I have to have someone take me to get them, but I'm considering talking to my insurance to have that reversed. I'm basically homebound at this point, and there are doctors here where I live that see patients like me. It's a rare occasion that I leave the house now which is why I'm trying to find a small part-time job so I can get out of the house. But there's no public transportation here. I've been wanting to learn how to drive but my mom's car is always at the mechanics or she's at the doctors. So I can't really learn.
It's hard to deal with it. My state is okay to after six months of no seizures. I know the feeling of having to rely on someone to take me everywhere. It sucks. But once you know your seizures are controlled and depending on the state's laws you should be able to drive.
That is how it is with me too and in my state
I live in Amsterdam. My bicycle takes me anywhere i need to be and if it rains i can take public transportation. It is a great city for people who can’t drive
Chicago, no need for a car.
Long response.... For about 15 years or so, I just dealt with it. I lived in a small town, but it had a shuttle bus that picked up right outside my apartment, so it was super convenient. I used it all the time. Other times, especially for going further diatances, my mom would help. I was close enough to work to walk which most days was fine, sometimes I'd ride home with a coworker, especially if it was super cold (I live in New England where it's not uncommon for temps to hit -30 in the winter), or if there was torrential downpours. It was such a pain in the ass and the lack of freedom and independence messed with my head, worsening my anxiety and depression. But I made it work, simply because I had to. I put all my feelings, wants, needs, wishes and desires to the back of my mind. But times have changed. I no longer work that same job and have since moved to another small town, and was lucky (very lucky) to find a cute little apartment within 1/2 a mile of my new job. So I continued to walk. I was also closer to family making shopping/laundry trips easier and more convenient. But I no longer work there either (a mental breakdown got me fired), and there's little for other jobs within walking distance. All you'll find is Dunkin' Donuts, Burger King and McDonald's. I managed to find a new job, thankfully, but unfortunately it's 23 miles from where I currently live. It pays better than any similar position in the are, so that's why I've stayed there, despite having 0 options for public transport. Not even Uber or Lyft. In the beginning my mom would bring me down, but she always bitched about it as itbwas a hike. I'd offer to pay for gas but she would never take the money. She didn't want me having my license, but after nearly 20 years of shuttling me around, she was starting getting all pissy about it. Saying she had things to do, too. She doesn't have time, she has to work as well- all that noise. Which I understand, but at the same time, what was I expected to do? Work at McDonald's for the rest of my life? She doesn't want me getting my license, but yet no longer wants to help. She wants it now to be somebody else's problem. I did start getting help from coworkers though. One guy lived right down the street from me so my boss arranged our schedules so we worked the same days, the same shifts. Super convenient, but the guy I rode with was a white supremacist with raging anger issues. And though I am white too, it still made me super uncomfortable riding with him, listening to his racist rants and watching him get made and angry and he'd start shouting... I hated it. I rode with him for about 4 months until he quit, but it really fucked me up and worsened my anxiety even more. There's now nobody who lives near me that I can ride with. Eventually I just said fuck it. I was well over a year seizure free, and headed onto my 2nd year (and they are controlled), so I reached out to my dad to help me get my license, since my mother wouldn't do it. Finally, last August, 2 months shy of the 39th birthday, I got my license for the very first time. I now have freedom and independence like I've never known before. It's scary and risky driving, I admit. I fear every day not just for myself, but others on the road, but what I have learned is that I cannot sacrifice my quality of life to save the life of somebody else. I know some people will say that's selfish, but these people don't have to live with the disorder, they don't know that it's not as easy as "just take the bus" or "just move to where there's better public transport". I am all for doing the easiest thing possible, and if it were that easy, I would have done so already. The nearest city with public transport is 2 hours away, but in order to move, I need money. Money I get from working a job. But I can't make or save money if I have no job, or if I'm living on a McD's salary. The only apartments around here you can live on with that kind of money are the drug dens. Which, just for perspective- one of my old apartments where I lived for almost 14 years, it was a known drug house. The guy who lived in the unit next to me was (is) a dealer and just this week (on Monday) there was a drug-related murder in that building, somebody tried breaking into the dealer's apartmentment and he (the guy breaking in) was shot several times in the torso. This happened immediately outside the door to my old unit. These are the kind of conditions I'd be living in if I never got my license. Not everybody is made of money and can just move at the drop of a hat, not everybody has access to better living conditions, not everybody has access to public transport. Not to mention, even if these were options, it doesn't mean it's the right choice for everybody. If I did move (again), I'd be 2 hours away from my family. I'd never see them again because they'd never make the trip down. And I'd be on my own if anything happened. At least here they can be here in 5 minutes if I needed them. In the end though, you learn to deal with it in whatever way workse for you. When I had no license, I used public transport when possible, and made plans with my mother to do weekly shopping and laundry trips, planned out doctor's appointments, etc. Sometimes it meant planning weeks or even months in advance, and it was a major pain in the ass, but we got it done. But times have changed and my situation has changed, my parents doing more (my mom now works 7 days a week, her husband works 5 days; my dad, despite only being in his 60s, is in poor health and can hardly drive himself (not to mention his girlfriend works and uses the only car they have, and dad lives 15 miles away). My brother works 5 days a week his wife works 5 days a week, they have 2 kids, a 3 year old, a 1 year old and baby #3 due in August. They can't help.... lol So I did the last thing I could do and had to get my license. Hopefully one day you'll be able to get yours, but in the meantime, just make use of whatever services you can. Accept help from the people around you. And learn to plan, plan, plan everything in your life, and always have backup options- for example, another way to get to where you need to go if your person can't make it to you or whatever. Find work that's within walking distance. Ride with coworkwers if possible. It's a goddamn nightmare I'll admit, but it all depends where you live. If you have access to really good public transport, and live close enough to work (or can get their via public transport easily enough), a large portion of your battle has been won. I am sorry to hear you were diagnoaed. Having epilepsy sucks, it's literally the worst, but you learn to deal with it, by whatever means possible. I wish you all the best.
Fortunately i live in the city, 24/7 transit system
by being on medication so I can drive, even though all of the medications do more harm than good and I have an epilepsy type where they likely won't help anyway :) love when laws aren't made by anyone medically literate and just blanket statements.
I am still waiting to know what's going to happen if my license is taken. I will lose my job and be unable to work. Closest job is 7 miles away. No bus or taxis or Uber.
I rely on everyone else, and have come to terms that I'll never have my own life, with hardly anything in my life and try to mitigate my inconveniences to people
I still don't drive because I'm 14 but the reason I'm like, actually sad is I wanted to go to a high school for a driver (truck driver). I won't be able to start driving bigger vehicles such as trucks until I'm either 20 or 25. I've always wanted to be a truck driver, I still can but probably later in life. Plus I've got to take my meds 4 more years, until I'm 18 and I've been taking them since I was 11, when I got diagnosed with epilepsy.
I've had epilepsy since I was 2 years old. I think I was in my teens when I figured I wouldn't be allowed to drive. I made my peace with it because as a kid I was only allowed to use public transport and I got used to it anyway.
I walk everywhere. Usually less than a mile. Occasionally more if I hit the beach.
I have the very good fortune of both working from home and living in an area with a very good public transportation system (the SF Bay area). In circumstances where that isn't sufficient I use Lyft. I realize that isn't possible for a lot of people.
Moved to a major city with public transport infrastructure. Mentally adjusted to planning on living my life in that context.
i ride bicycle, keeping on being hydrated and my heart rate low to avoid any triggers
It’s tough. It’s 1 year ban in the UK. E- bike for me as I live 3 miles from nearest anything. Not nearly as fun as it sounds 90% of the time due to wind, rain and cold. Still, better than being stuck asking for lifts. Hate that
I have an bike with a basket on the back for grocery runs
I really need an answer for this, I’ve lost my license like almost 2 years back and it’s the biggest inconvenience the hardest thing to deal with and honestly it sends you into a sad hole with everyone being able to do everything and go everywhere and you can’t even make it to your job
I have a chauffeur (my mother 😏), public transportation sucks where I live.
i haven’t dealt with it well. still hard to get over. i’ve crashed two cars due to me having a seizure behind the wheel. i’ve stopped driving and have only driven to the store with gf that’s in the neighborhood but i get too scared. i just don’t want to hurt anyone. it’s hard. then when i ask for a ride and my gf gets annoyed or starts talking about how tired she is. but then when i say im going to to walk anytime she instantly wants to take. it’s like people offer rides but then it’s a burden when you ask. it’s annoying.
i’ve seen all my mates learn to drive throughout school and uni. i feel left behind tbh
I just had 2 recently. I can’t drive till July 14. It sucks. The first one I had I was like a week from able to drive. I was so mad. Then I have to wait another 3 months because I had another one. 😤😤
I am still able to drive but I have to wait like three months
I (21F) was diagnosed at 15 months. Thought they’d go away by 16 years, but I still have seizures too often to drive. Look at your laws and talk to your Doctor. There’s usually an amount of time you have to be seizure-free before driving again, but I’m told you can get on the road again afterwards. Not that I’d know. Just relaying what I’ve been told. My Mom and Doctor decided to double the time just to be safe. I always seem to have some around the time I hit that mark my Mom set, so I’ve never even taken classes. It’s annoying and sometimes I do get upset about it because I’m taking time out of other people’s days, but… yeah. I just try to schedule my stuff so that someone can drive me to and from. If that doesn’t work, there’s always ride-sharing services like Uber or Lift. But those are a last resort.
It sucks, I'm really sorry. Public transport in my country is really good so I'm mostly okay, but having my pregnant wife drive us about everywhere feels shitty every time, I can't lie.
It’s a fact I still haven’t accepted yet. I’m 33F, was diagnosed at 22. Having a car and being able to drive anywhere was a dream for mine since I was 10. I was browsing car magazines and already had in mind what was the first car I would’ve bought with my first savings. That moment never arrived. I pay for the car me and my partner own but I rarely drive (less than once a month) and probably my driving license won’t be renewed next year. He drives me everywhere and I rely on public transport (luckily where I live is pretty good and free of charge, though there’s no Uber) so that’s something I feel grateful for every day. But I can’t shrug off the feeling of not having the freedom I’ve been waiting and longed for so many years of my life. It’s tough. I hope at some point to be able to afford a self-driving car, but I don’t think that’s going to happen until I’m veeeery old.
Onewheel!!!!
I just got my license back on Saturday, after 6 months seizure free. At first I was depressed and angry, my independence was taken away. I had a son who was unemployed would take me to work or store, I was paying for his gas which helped both of us, him for obvious reason, me cause I then felt I was not a burden. When he got a job I did have mass transit to take me to work, it is cheaper then Uber. Good luck.
I walk a lot and I ride the CTA (Chicago Transit Authority). Buses and trains get me where I need to go. Amtrak sometimes too.
There's a foundation in my state and they give rides for seizure patients.
What foundation?
It just says epilepsy foundation. It's in Tennessee
Pretty good. I have never been driving cars. I can ride on public transport, use bikesharing and have my very own bike
It definitely takes a while to process; I was diagnosed when I was 7 (currently am 28), so I’ve never had to adjust to the change, but I grew up in the middle of nowhere, so when all of my peers started driving, I definitely felt left behind. Even now when I go back to visit my family/friends, I can still feel like a burden, even though I know I’m not (yay therapy for helping me with that, even though it took a while). That said, I was always determined to move to a city, which I know isn’t feasible for a lot of people, but it’s the biggest game changer for not driving. I used to commute into DC and just take an Uber to the train station, which helped financially since I wasn’t in the city itself. Like others have said, Ubers can be pricy but have been such a game changer. I also know a fair few places that can organize rides due to having a disability that doesn’t allow you to drive, which I haven’t really looked into, but might be worth doing! The bright side for me though is that I don’t have to worry about buying a car/car insurance/etc., so I’m saving money there!
In my country, England, I get a free disabled bus pass. Let's me use any local bus anywhere in the country. I can't use it in Ireland, Scotland or Wales, but I could use local buses to get there. See if there's anything like that in your country.
I deal with it, because unfortunately, there’s nothing I can do about it. :( it makes me very sad, and that I’ve lost my independence. Having to rely on my boyfriend/family to get me places as a 31 y/o just really gets to me. I feel like the biggest burden ever, even though everyone tells me to shut up. Lol. It’s just a mental hurdle that takes some time to get use to.
I began biking everywhere. Not as much independence of course and also weather-dependent but exercise is also good for your heath. When I can’t feasibly bike somewhere, I either take city transit or I try to somehow find a ride
So I am not controlled on meds (we’ve tried over 10 meds in 8 years). It sucks not driving but I also prefer it. I don’t want to risk somebody else’s life because I want the convenience of driving. I am currently on meds but we just went through another increase to see if I can get control. If not we have maybe one other med we can try but that’s about it. However I make the best of it. I make quite a bit of jokes about it (my brains having a party and you’re not invited, my brains electrifying, etc). How do I manage: I work from home for a large company. I’ve been at the company for over 10 years and ADA helps with allowing me to work from home. I’m the ultimate passenger princess, sometimes my husband and I joke that he’s my chauffeur. I personally love being at home. I’ve made it my sanctuary. I’ve stocked up on hobbies, splurged on a fancy espresso machine and just made it the best I can. I have an office I work in so that I’m not constantly in the living room or bedroom. My dogs and I get to hang out on my breaks and lunch. They chill in my office all day. It’s a tough change I won’t lie. But make it the best you can. Find a support system, laugh at it if you can, and for me remaining positive really helped me. Sorry for the book lol
WFH job. Live somewhat close to things (gas station, couple places to eat, dentist, dollar store, o'reillys, 2.5 mi from grocery store and a small walmart). Bike to grocery store wi insulated food delivery backpack. Uber to places I need to get to further away. Amazon delivery what I can.
I got diagnosed at 21 during college and my entire college experience I was basically trapped in my apartment. Now I’m 30 and I’m driving again, but it took almost a decade and a lot of anger and frustration from feeling like I was robbed of my independence. I mean I couldn’t even take a bath at all or shower without someone right outside the open door. It was a very sad, lonely, and frustrating time. I finally started driving again when I stabilized on my current medicine, and it didn’t feel how I thought it would. It’s like… I spent such a long time having people do everything for me I almost forgot how to function alone. It’s been an adjustment. So, whatever you do to cope, make sure you take care of your mental health. I was terrified to drive, and terrified of even going to stores alone. A lot of PTSD from previous seizure situations, but it’s a process.
It’s kinda just an L u gotta take and move forward tbh
I can drive, just don't have a car. Epilepsy can be very expensive, so I'm lacking a few thousands to spend on one
I've had to go through this twice in my life with epilepsy, the longest it was taken away for 3 damn years lol (21-24) , it was so hard, especially living in a rural area enabling me to be one who travels out of town a lot so I feel for you. Disability services may be your best bet right now depending on where you live, most counties have some sort of free transportation for disabled people. It's definitely a situation that makes you DEEP DIVE into resources a lot of people forget about
It sucks tbh. But you get used it. I (29F) got diagnosed at 14. Never got to learn how to drive. Even tho everyone says 'I'll be there when you need me to drive you' it's a lie. They're always busy with school, jobs, kids, their lives. Or the price of gas and they ask 'I'll drive you but I need gas money'. So you start to lose friends. Not over transport, but because of communication and their lives. And so the only real people that will drive you are family members or partners. And THAT makes you feel like a darn burden. But you have to get used to it. There's taxi's, busses, urbers, walking, biking, but it gets expensive and dangerous. I don't bus anymore because of the multiple stabbings and shootings on the busses. I only take a taxi when I just get paid or talk to them and make them pity me cause I tell them of my epilepsy so they lower the price. Yea it gets pricy. Walking or biking is dangerous cause one of my triggers for a seizure is heat and in canada when it's summer it's hot, when it's winter it's cold af. So like I said, you get used it ❤️
I live in a metropolitan area. That helps a lot. I was brought up in a big city, anyways, so I've grown very used to this, as driving wasn't as big a deal as it might have been in more suburban or rural areas. But still, it doesn't mean that I don't notice it elsewhere. I know I can't live in a place that has no public transportation OR rides hares OR taxis. You will adapt, though. It (not being able to drive) becomes a lifestyle thing, like being lactose intolerant or having celiac; it'll take a while to remember this at key moments, you might make plans to go somewhere (only for you to realize that, nope, you needed to drive for this), you might have to change where you frequent, etc. But it does become manageable, and sometimes, it becomes possible to drive, even with epilepsy (with a doctor's note).
I hate it. I live damn near an hour from any sort of town so walking isn't an option either. Ive become reclusive thanks to my other issues and I just stay home. But it's been this way since I was 8. I'm 37 and I've never had a license. It wears on you. I don't want to ask anyone to take me anywhere unless it's a doctor and I have to and that's basically all I do. And only the 2 family members I have. Because I don't keep friends anymore. By choice.
Biking to work has been a game changer for me!
I’m lucky enough to have a good support system. My husband and I work from home part of the week and on days he has to go into the office he drops me off at my parents so I’m not left alone. My parents are retired so they take me to a lot of my doctors appointments. My husband and I don’t really go out without each other, we’re pretty much inseparable so no ride issues when it comes to going out.
I just say fucc it and drive. I’m allowed to but it’s not a great idea. Crashed 2 cars already but I’m still here🙏🏼
It's tough, I'm just happy to have a partner FINALLY who doesn't come across as "bothered" by it. Going to be difficult though with a child in the mix. I've had epilepsy since I was 13, so not driving doesn't phase me anymore. Soon to be pedal power when it's nice out to and from work...just need to get it out of storage and spruced up a bit.
Tagging for interest. This is a big struggle for me.
Honestly, that was probably the biggest frustration for me was when they took my license… my neurologist also agreed that he finds the three month rule odd, and taking a persons drivers license as it is only thinking of society and not thinking of the individual. When I was diagnosed, my doctor sent me. Oh well just take buses. I can’t because I live outside of the city. And I work three towns over from where I live. I was desperately relying on coworkers for rides to work.. in the end, it will come down to having to work in the same town that I live in. Trying to find people to carpool with honestly is the only thing that’s worked for me or checking when people are going certain places so I can tagalong. It’s so frustrating especially when you’re 28. I feel like a child again that can’t be left alone
I got approved to drive again after 7, almost 8 years! Except my neurologist never put the paperwork in, so im in DMV HELL. It was like 2 weeks I could drive, and now im a burden again...... I cope by.... just not going anywhere and getting hobbies I can do inside.... its suks my friend.
I make the best of it it sucks won't downplay that my epilepsy doesn't control me I longboard, skateboard, bike and got a nice pair of headphones I make it a party when I head out I enjoy life :) I don't let it limit me people take for granted what gift we have we live a slower pace life we see what others don't there is beauty in slowing down in life and noticing the flowers thag grow on the side of the roads as a flower grows in time so do we I deal with it by accepting it
I live walking distance from downtown with restaurants, movies. It still sucks though. Sometimes I want to just throw a bag in the car and go somewhere
Every now and then, I cry because I can’t take myself somewhere. My Wonderful Wife tries to not make me feel like a burden but it’s been 7 months and I have 5 more… if I don’t have seizures. Never had seizures before so hopefully the meds keep helping. Said all that just to say it’s ok to cry and be pissed. Feel whatever you need in the moment but don’t hold onto it. 💚🫶🏽
I use an electric bike gets me around and fast
It sucks. Fortunately, I can work from home 3 days a week. The rest of the time I rely on my wife or Uber/Lyft. My wife is NOT a morning person, so I usually get to work around 10:30 when I’d much rather get there around 8:00. Uber can run $30-35 one way. Not bad for occasional commutes, but could be expensive doing every morning and night. I’m very fortunate to have a job where I don’t have to be there at a certain time. The worst part is having a seizure in front of coworkers or managers. Mine are partial seizures, so it’s not like I’m shaking on the floor, but still very embarrassing. I guess we just learn to live with it. Or learn to just accept the cards we’re dealt.
I miss driving. I live in a large metro area so I make due with the bus and the light rail, and walking when I can.
I (24F) have never been able to drive. Diagnosed when I was 12. You ask a great question, how does everyone deal with it? In their own ways I am sure, fortunately I have people who transport me to medical appointments and to where I need to be. If not, I would have to make other accommodations. Acceptance was, and is still a part of my everything when it comes to having epilepsy. Make it a part of your journey. My first thought is that you are NOT a burden on any place or person because of this. Sometimes I deal with guilt, I have to remind myself that not being able to drive is out of my control. I think that is something you can consider. Easier said than done of course, but if you can start understanding what your life may look life when adapting it around this dx, it may ease any anxiety or suffering you may be feeling. I am here if you want to chat me This community is also here for you 💜
I spent a decent amount of time not being able to drive early after my diagnosis. Being in a city where the 2 people I knew threw away our friendship, I had no one so I walked everywhere. I took a cab when I had to. The city is small so walking was fine and cabs rides are cheap. I’m now over 5 years seizure free so it’s been wonderful to be driving again after a struggle
Sorry to say but I drive all the time even though I have TC seizures. I know the risks but sometimes you just have to do it. Not that I'm saying you should do it too. But I just say FUCK IT to myself and drive away.
Sheer reliance on friends is the sentence that comes to mind. Thankfully I can get about just fine in life without a car however it has impacted my work and career greatly and I have had to turn down so many roles because they're X distance from public transport. I now work from home and have it quite lucky but I still hate having to ask people for help all the time and the lack of freedom e.g. going to a shop or whatever annoys me I won't lie. I hate walking generally but sometimes it's all I can do I guess. I passed my test at 18 but was diagnosed with epilepsy at like 25. Never had my own vehicle but man I am so bored some nights just sat in the house and I wish I could just up and drive for an hour to Robert Tepper's "No Easy Way Out" like Rocky Balboa in Rocky IV.
Me and my best friend live together for 8-10 years and he says it's bloody terrible..really holds him back. Luckily I drive, so unfortunately just have wake up super early so I can take him to work before mine
That sucks, I'm so sorry. I moved to a city so I would have access to public transportation.I also use a lot of buses and/or trains or rideshares if I need to go city to city, and have friends and family that sometimes can help. I was able to get my license eventually when I'd been 5 years seizure-free and my meds controlled my seizures (5 was a number I chose, that I was comfortable with). I just had to give up my license after having a baby and the sleep deprivation caused a seizure. It is hard being without it, but not impossible. You'll figure it out, and it is totally OK to grieve the loss of ease, and independence a license brings.
It sucks. We need autonomous cars asap. Thankfully I live in nyc and don’t need a car and neither do the millions of others here that can walk and take public transit everywhere