Driven.

Many state driving laws and medical review procedures are based on discrimination, not science. And for people with chronic illness, this can be the biggest barrier to leading a normal life.

From a 2021 paper by a J.D. candidate at University of Mississippi’s School of Law:

Many people with epilepsy are able to drive with no greater risk of causing a crash than the general population. Unfortunately, the vast majority of states do not take into consideration the types and severity of a person’s seizures, ignoring decades of research and medical advancements and thereby forcing individuals off the road with no opportunity for appeal.

Greyson’s 36-page comment argues that state laws should be based in “uniformity and science rather than stigma and exclusion.” What an idea!

A lot of people get really squeamish at the thought of someone behind the wheel having a seizure, cardiac syncope, or other loss of consciousness. As someone who’s experienced such events, I’ll be the first to admit that the idea terrifies me, too. So let’s confront our fears and fact check a few things together.

According to NHTSA crash data about driver-caused accidents: “about 41 percent were recognition errors, about 34 percent were decision errors, about 10 percent were performance errors, and about 7 percent were nonperformance errors.”

Nonperformance errors - that measly 7 percent - includes the 2.4% of driver-caused accidents due to “heart attack or other physical impairment.” In other words, barely any accidents are caused by stuff like seizures and loss of consciousness. So what should we do to keep everyone safer on the road? Drown those with certain stigmatized medical histories in paperwork for the rest of their lives, obviously.

Not only does physical impairment behind the wheel not happen very often, it’s tough to control and prevent when it does. I haven’t been able to dig up statistics on how many of the 2.4% of accidents due to physical impairments were first-time health crises, but I’m guessing a lot of them were. There are myriad ways to lose consciousness without warning. We all have these mechanisms. Whether or not you’ve experienced a medical blackout in the past, you could have one in the future. When I had my first seizure, and when I had my cardiac arrest, I was not in a high-risk category for either of those events. Now, as someone with known risk factors, I’m working with my doctors to understand my body. I’m hyper aware of what makes me vulnerable (passing illnesses, hydration levels, sleep, etc). Those of us with known risk factors for loss of consciousness might be in a pretty good position to judge whether or not it’s safe for us to drive on a given day. We take extra precautions. Blanket policies enforced by bureaucrats cannot possibly afford the type of nuance necessary to handle these decisions. What they can do, though, is discourage open discourse with doctors in states that still require mandatory reporting.

I haven’t lived in a state with mandatory reporting since getting tagged with an epilepsy diagnosis in 2018. I was the goody two shoes afraid of liability who turned myself in. I’ve promptly self-reported my seizures to the DMV in three states now, to varying ill effects.

Mind you—while I’ve had episodes blamed on epilepsy and episodes blamed on my heart, nobody said anything to me about driving after the cardiac arrest. Maybe that’s because the seizure risk was considered more urgent? It’s definitely more stigmatized. I absolutely dropped dead, without warning, of cardiac arrest in February 2023. But I have no confirmed epileptic seizures—just a history of a few seizure-like episodes when gravely ill. Last fall, I completed a 7-day EEG and showed absolutely normal brain function off all meds, and I stayed off seizure meds after that. For five months. Nothing. And yet the scariest thing about me, apparently, isn’t that my heart could stop at any time for no reason but that I’m presumed epileptic. Epilepsy diagnoses are very, very sticky—as soon as the mere hint of possibility is attached to you, you never escape it. Clean EEGs don’t disprove the hypothesis that you have some form of sneaky epilepsy, so you’re never really free. In my experience, while people freak out a bit about cardiac issues, they’re more likely to treat you like a “miracle” and to think of your heart events as unfortunate, unlikely-to-recur circumstances. “You poor thing! God bless!” Versus with epilepsy, where silent, unspoken revulsion says it all—you monster. So while technically there should have been some impact to driving from my cardiac situation after last year, I didn’t feel it much. The restrictions were all around seizure risk, and the seizure was what I initially reported to the DMV. So that’s what stuck.

Last month, I finally asked my neurologist how he’d feel about submitting paperwork for me to drive. I’m the kind of person who waits double the state’s legal requirement (states range from three to six months, and it’s six in Virginia) before driving again after a loss of consciousness.

Here are some factors that should have informed DMV in their determination about my driving, but that weren’t considered:

• My last loss of consciousness followed weeks of dizziness and a COVID infection that turned into heart complications. There was a lot of notice and multiple consultations with doctors before I started passing out.

• I carried five safe driving points (the maximum allowed) on my Virginia driving record before my cardiac arrest.

• I can’t even remember my last insurance claim or accident.

• I bought a new car that has pedestrian detection, collision assistance, and radar cruise control after my initial seizures; I refused to drive my husband’s vehicle (which lacks those things) even after being seizure free for 5 years.

When I called Virginia DMV to self-report my breakthrough seizure during COVID infection in late 2022, the guy who answered the phone acted all confused. “Nobody ever does this…” he flailed. There was no discussion about the general seizure policy (which I’d already familiarized myself with on the website). No handoff to a case officer or nurse, as I’d experienced in Maryland. The Virginia medical review board just immediately (well, as immediately as they could by snail mail) suspended my license and issued a “compliance summary”—the same strike on my record as if I didn’t pay a fee or got a DUI. The compliance summary stated that I was basically an outlaw until I could send in a specific form from my doctor stating that I’d been seizure free for six months. Which obviously was not possible until six months had passed. And because I’m cautious, I waited for a year to apply to drive again. So for a solid year, my driving record said I was “noncompliant.” To a rule-follower like me, this was devastating.

The weirdest part is that I voluntarily surrendered my license before Virginia processed the suspension—which is what the letter instructed me to do. You’re supposed to turn in your deactivated license for a state ID and then get a new license when you’re approved to drive again. Why? It’s a good reason to charge people with disabilities a $20 processing fee every so often, I suppose. Yet DMV had the gall to “suspend” my license once it no longer existed. The one thing I thought I would avoid by self-reporting and voluntarily surrendering my license was a “suspension” on my record. No dice. As it turns out, you can be a DMV outlaw without even being a license holder in the state.

Is it just me, or is this a breathtaking amount of backlash for voluntarily reporting a medical condition?

The truth is, I wasn’t going to drive for six months whether or not the commonwealth told me not to do so. Couldn’t I just have avoided liability concerns by not driving for a while, and kept this whole thing to myself? This time, the consequences of fessing up were not as bad as they could have been. As a D.C. resident several years ago, I had a car that wasn’t paid off yet. You can’t insure a car without a license and you can’t have a loan on an uninsured vehicle. I also wasn’t too keen on keeping my beloved Mini Cooper on the streets of D.C. for an entire year (D.C. is even more archaic about their waiting periods than Virginia…) So I had to give up my favorite car. Then later, when I had been seizure free for over a year and got my license back, I bought a new car. And paid additional insurance due to the long lapse in coverage. Combine that with having to leave an apartment lease early and move to where I could more easily access public transportation. The worst financial hit from epilepsy came from voluntarily reporting my medical issue to the D.C. DMV, despite the fact that I never caused an accident and went nowhere near a driver’s seat for the legal waiting period. I guess this is why “nobody does that.”

Back in Virginia in 2023, I shuddered at the thought of self-reporting and getting embroiled in what I’ve come to think of as the “medical justice system.” But I’m a homeowner. I have more to lose now. And I’m so, so risk-averse. I worried about liability if I someday had a freak seizure years later and hadn’t reported my condition to the DMV. So I did what almost nobody does, and I made that fateful call.

The main consequence is that I will carry this stigma for…well, maybe forever. At least as long as I live in the commonwealth. Virginia’s medical review board “lost” the initial form from my doctor, which was faxed directly from his office to the number on that DMV form. I called a couple weeks later when my license was still showing as suspended, waited 30 minutes to talk to a person, and was told they had no record of receiving the form…but they did offer a different, secret fax number my doctor could try. It takes three business days to receive and log the form by fax each time, and up to a week to review it and make a decision. I explained all this to my ever-so-patient neurology nurse, who is a veteran and has heard of such fax issues before. She re-faxed, I spent another 30 minutes on the phone a few days later, and some bored DMV bureaucrat who knows nothing about my health debacle checked the box. I could drive. Well, for now.

The standard “sentence” is that the DMV requires medical documentation every six months for at least 10 years. It’s one of, if not the, longest probationary periods in the country. In the course of a decade, my doctors may clear me from having epilepsy. I could continue to get clean EEG after clean EEG. But I’ll live on in the medical justice system as a near-criminal because of my diagnosis, and I’ll have to keep proving I should be allowed to drive.

I’m beginning to see why the vast majority of people who experience seizures or syncope sneak around, crossing their fingers and hoping for the best.

The decision to self-report is especially fraught in rural and suburban areas, and especially for those with families to support and who don’t work in industries where teleworking is possible. Three quarters of U.S. residents are not located in urban areas, and cars are necessary for most of us to live a full life—even, in many cases, to survive on a basic level. Doctors, groceries, and jobs are suddenly out of reach when licenses are restricted. I’m not saying there aren’t cases where this is a necessary evil. I find cars to be exceptionally scary for anyone, and there should be a process for evaluating driver safety in the case of medical issues. But it should take into account a driver’s overall compliance with treatment and driving record. Partial restriction should be considered more often on an individual basis. Most importantly, we should tackle the unsafe driving practices and conditions that are most likely to lead to accidents (texting on the road, drunk driving, driving while tired and stressed) instead of mindlessly creating laws and procedures motivated by stigma and uninformed fears.

I was so put out about how my current DMV handled self-reporting, I kind of wanted to move back to an area where I didn’t need a car. I didn’t want to pay money into the DMV system anymore. I hate paying Virginia $800/year in vehicle tax for a car I may or may not have the privilege to drive (and part of that depends on my health, but part of it depends on their willingness to receive and process paperwork properly). I don’t want to keep being singled out and stigmatized. I want restrictions to be between me and my doctor. I spent a full year being dependent on my husband to get anywhere in the valley, and I don’t want us to have to do that again.

When I first talked to my neurologist about driving, he easily agreed to send in the form. I hadn’t been sure, up until that moment, what he would say or how I would feel about the prospect of getting behind the wheel again. I figured I’d cross that bridge if I ever got to it. We finished talking, and he took the DMV form with him when he left the room. Chris and I said goodbye to the nurses and receptionists and headed towards the elevator. We boarded, along with three old ladies. And that’s when it hit me: I might get out of the “jail” of not driving in rural Virginia. I might not be a second-class citizen confined to feet, bike, or 49cc moped forever. I started having visions of going to the grocery store—any grocery store—and doctors, all by myself, without requiring Chris to take hours of leave. About going hiking and giving my field dog the exercise he deserves. Scenes from past lives when I was an independent adult with transportation started arising in quick succession, and I was unable to hold back tears and then sobs as I hid my face on my husband’s confused shoulder. We walked out into the parking lot as tears streamed from behind my sunglasses. We were heading towards the car, my car, purchased not for any kind of sexy driving experience but for the advanced technology that allowed me to move through the world safely. The car that might actually feel like mine again one day. I was sobbing openly by the time I crawled into the passenger side and realized I might not always be a passenger. I might not always need to be driven by someone else.

There were still a lot of burning hoops to jump through, after that—DMV had to accept my doctor’s report. Oh, actually, first they had to admit they received it. DMV then had to review and process the form, and send me notification that I’m permitted to drive. I had to get Chris to take me to the nearest DMV 40 minutes away. I had to pay Virginia to reissue my license. I had to make sure my insurance was good to go. But we owned my car this time around, so at least it was there waiting for me throughout the bureaucratic hurdles.

As I sat in the passenger seat crying like a baby outside my neurologist’s office on February 7th, the one-year anniversary of my sudden cardiac arrest, I realized how afraid to hope I’d been. I’d often convinced myself I didn’t want to drive ever again as a self-defense tactic. Now I realized just how badly I wanted to drive, and how much that independence meant to me. Being restricted to passengerhood is the worst restriction I’ve faced from any of my health problems. Hands down. Easily.

I became a driver again, a few weeks after the one-year anniversary of my cardiac arrest. It has been exhilarating; it has been scary. It might spur a whole new round of PTSD therapy, jury’s still out on that. But however driving feels on a given day, it is again an option, not just medically sanctioned but legally sanctioned, and so I’ve pounced on it wholeheartedly. This may end up being one of the most important steps on my path to recovery and full rehabilitation.

I recently read an article about a woman with MS who sued Florida’s DMV over refusing to remove her from the medical review process despite four years of documentation from her doctors that she was fit to drive. An attorney with Disability Rights Florida stated: “It’s our organization’s hope that Ms. Berkley’s case will encourage the Department to make its medical review process more fairly-applied and understandable, based on actual safety risks posed by motorists and without reliance on outdated speculation, stereotypes and generalizations about individuals with disabilities.” One can dream. This woman is my hero.

It’s hard to imagine that I’ll live to see a shift in medical review processes in the states. Who will fight for it, besides this one brave Florida woman with MS? The people affected most by nonsensical DMV regs are (a) those with disabilities, (b) those who live in rural or suburban areas without public transportation, and (c) those who live alone. It’s the invisibles among us who are driven.