Living in an area that is ravaged by the opioid crisis can make getting decent healthcare a bit tricky. That is why my family and I still travel two hours to see our primary care physician for illnesses, as well as for routine checkups and such.

But what happens when you have a seizure so severe that it scares those around you badly enough to call 911 while you’re still unconscious?

Well, here’s what I have been able to piece together from my husband’s eyewitness recollection and thoroughly reviewing my records regarding what happened to me after I was transported by ambulance to Dickenson Community Hospital in Clintwood, Virginia. It’s important to know that I had been seen in the same ER six months before when I was transported there by ambulance after suffering a seizure at school. That time, I came in conscious, was monitored, released, and recovering at home within a few hours.

Not long after I arrived in the ER this time, I suffered a second seizure. My husband, who was at my bedside at the time, notified the ER staff that I was seizing again. No one answered his calls for help or came to deliver basic seizure first aid until I turned blue. In order to stop the second seizure, the ER staff administered a 2mg dose (or, as I like to call it, an elephant tranquilizer dose) of Ativan via IV. Thankfully, the Ativan stopped the seizure, but it also kept me functionally unconscious for the next 48 hours.

While I was DCH ER, the care team ran a series of lab and imaging tests. One of the blood draws revealed an elevated ammonia level – well over twice what is considered normal, in fact. The labs also showed a mildly elevated alcohol level and an elevated thyroid hormone level (something that has never been abnormal in my life). Someone on duty in the ER asked my family if I drink (I don’t). My husband/my mother/they both told the care team that I don’t drink. However, instead of taking their word for it and simply re-testing the labs, the care team noted in my chart that they were concerned that I was experienced DT-related seizures due to alcohol withdrawal.

This resulted in a transfer to a hospital two hours away (hello to another ambulance bill). I was admitted to the hospital some eight hours after the first seizure. My ammonia level was immediately checked at the “new” hospital, and the level was normal. But because the staff at DCH ER shat the bed and refused to believe that my husband and mother were being honest when they said I don’t drink, the hospital CT-scanned my abdomen (hello CT scan bill). The scan was normal. The ammonia level was normal. But I was still fed lactulose for two days (hello hospital pharmacy bill).

About the only thing the hospital didn’t do during my mini-vacation there was call or notify my primary care doctors, whose office is RIGHT ACROSS THE ROAD. The few people familiar enough with my medical history to answer questions about my alcohol use (or lack thereof); who could have explained that I have Gilbert’s Syndrome, which means my bilirubin levels tend to elevate when I am sick, stressed, or hungry; who know that I have had seizures in the past, but had not yet been diagnosed with epilepsy did not even know that I was in the hospital that sits less than 50 yards away from their office. I was unable to advocate for myself during this time – elephant tranquilizer, remember?

People are human, and humans make mistakes. In my case, though, the mistakes, the refusals to listen, and the faulty judgments compounded and left me owing a hefty bill that I cannot pay for tests and treatments that I never needed in the first place. I spent three days being treated as an alcoholic (despite anecdotal and laboratory-confirmed evidence to the contrary) instead of having the tests and care I needed to try to pinpoint the cause and proper course of treatment for my epilepsy.

After I was released from the hospital and reviewed my records, I immediately filed a complaint with DCH ER. After three months without a response, I called today and learned that they had dismissed my complaint and closed the investigation because, according to them, “there’s no way they could have messed up.”

I hope I never have to visit DCH ER again – I’ve given my husband strict instructions to just keep me on my side and drive as fast as he can to get me to Pikeville should I suffer another seizure. He knows where the needle and thread are and how to use a tourniquet in case I’m bleeding out. I’m going to make him watch The Dollmaker later to learn how to perform a hasty tracheotomy. But, for the sake of everyone else who doesn’t have a choice – or maybe for my own sake one day if I do something else to piss off the epilepsy gods – Here’s my advice to the DCH ER staff: Listen to your patients. If your patient is unconscious when he or she arrives, listen to his or family. If you run a test and that test reveals results that are out of line with what the patient or their family tell you, speak with the family about it, and RE-CHECK THE LABS. You don’t have an easy job, especially in this area. But don’t let what you normally see cloud your judgment of everyone who comes through your doors. Better yet, don’t judge at all. Just listen and put yourself in your patients’ shoes. Also, it’d be a great idea to brush up on epilepsy first aid.