I am a DNR patient here in New York state. Essentially, that means that should my heart stop beating or should I stop breathing, I have the documentation necessary to prevent life-saving measures being taken, whether outside or inside the hospital.
There are many reasons for that, and you can read that page that I linked you to. It discusses everything about DNR and MOLST and why I’m doing it. One of the most relevant reasons is the fact that I have epilepsy, which is a very serious seizure disorder. My seizures range from mild (staring off into place and being non-responsive) to major (seizure during sleep).
My seizures tend to be absence seizures, ranging from hardly detectable to the point of everyone seeing that something is wrong. However, I have had several major seizures, previously called grand mal (now called tonic-clonic) seizures.
In October of 2025, I had two seizures at work. I collapsed on the ground in the front of the building. My supervisors had to hold me down so that I did not hurt myself. The next day, I had a drop seizure, where I literally dropped to the floor and was out for a few seconds.
There are also other things that happen. Sometimes, not always, but sometimes, I experience a seizure when confronted with strobe lights. Usually, however, I can shield my eyes or look away before anything bad happens.
Sometimes, I experience seizures in my sleep, which are very serious as they can be fatal. Referred to as Sudden Unexpected Death in Epilepsy (SUDEP), people can and do die in their sleep, mostly due to swallowing their own tongue and choking to death. There are other causes, but I have had seizures in my sleep, to the point where I had to order a special bed alarm system.
Basically, I wear a device on my wrist when I sleep, and it triggers a very loud alarm when it detects an oncoming seizure. It also notifies my significant other and someone else. I’ve set it, however, to not automatically call 911 as I don’t want intervention. If I’m meant to die, then that’s what’s going to happen. My DNR and MOLST are set up for that reason.
If I pull out of an overnight seizure on my own, then that’s awesome, but intervention in the form of CPR or whatever else is forbidden according to those documents. My SO’s sister has epilepsy, so she’s very well trained. I did have an overnight seizure the night before this article was published in October of 2025 and she was able to clear my air passage and hold me down so I didn’t injure myself.
I can confidently say that she saved my life. That being said, she knows that if I do stop breathing on my own, she is to wait five minutes and then call 911. She knows not to administer any life-saving measures. By the time the first responders arrive, it’ll be too late for intervention and that’s the goal.
She was able to pull me through without those things, so I appreciate what she did. Have I had other seizures overnight? I did one time, but I woke up in time to get myself breathing normally. There have probably been others that I never noticed.
Do seizures affect my day to day life? Yes, over time, things have become progressively worse and I don’t think they’re about to get better any time soon. I am on the best medication possible, but it’s not enough. Unfortunately, that’s just the way it is with seizures. Perhaps the biggest impact on my life is the fact that I can no longer legally operate a motor vehicle.
My license is now medically revoked, and just driving alone is illegal and will result in my arrest. If I wind up hurting or killing someone because I had a seizure while driving when I shouldn’t have been driving, the criminal consequences will be dire and the moral implications are huge.
No one should have to die or be injured because I made the selfish choice to drive. And anyway, despite the fact that I have a DNR and MOLST, I am not suicidal. Having a seizure while driving could kill me, and that’s not the goal. As I’ve stated before, if I were suicidal, this article wouldn’t have been written.
Another way that my life is affected is through my sex life. I have had a couple of seizures during the sex act and that’s embarrassing and awkward. Fortunately, the woman who is my significant other is related to someone with epilepsy, so she stops to make sure I’m okay and in a couple of minutes, we pick up where we left off. I only mention that to show that seizures can and do trespass upon all aspects of one’s life.
Unfortunately, there is no cure for epilepsy. All that you can hope for is medication that reduces the frequency of seizures. Until recently, I went without a seizure for well over a year. I had just gotten my license back and now this.
I usually get a warning before a seizure actually hits. The warning time, when I actually get one, is within about three minutes of the seizure beginning. I’ll be hit with a sudden feeling of dizziness and nausea, blurry vision and slurred speech. I use that warning to my advantage and find a safe and discreet space to have that seizure.
When the seizure hits, I black out and then remember nothing. Sometimes, I don’t get any notice and as such, I have the seizure in front of people and there’s nothing that I can do to control that.
I do have a shot at having a normal life, thanks to a VNS system. Essentially, equipment will be implanted in me with a wire going to my brain. There will be a special magnet that, when pressed near the heart, will trigger a reaction that snaps someone out of their seizure rather quickly. It’s easy to use. I don’t think it’s likely that I’d be able to administer it to myself, so I’d have to be around people who would be willing to help.
As far as I’m concerned, seizures are now a part of my life, often on a daily basis. There’s no sense in complaining about it. It just is what it is.