Bel’s Story

This is a bit long and not pretty so bear with me…

I was diagnosed with complex partial seizures in 2006. On Wednesday, November 27, 2019, I was admitted to a West Side of Chicago hospital’s EMU unit for a 2-3-day continuous video monitoring EEG. I informed the staff that due to an issue between my epileptologist, the pharmacy and insurance co, a refill of one of my seizure scripts (Clobazam 15mg) was not filled and I was without that medicine for “two, going on three days.” I also informed them that I was sleep deprived, which is a trigger for my seizures. The admission instructions I was provided indicated that I would receive medications while at the hospital and it would not be necessary for me to take medications from home. After my medical and behavioral history was taken, but before the EEG leads and video monitoring were activated, I experienced a seizure that is typical of complex partial seizures (as described in a PDF from the Epilepsy Foundation under the “Learn what to do if seizure behaviors are mistaken for criminal behaviors and rights of inmates with epilepsy” section)

While I was unaware of the events that transpired during my seizure (as is common with focal seizures), the following is an account of what my sister relayed to me once I was no longer seizing and was conscious and lucid:

My sister and I were ordering my lunch and dinner when the recognized that “look” on my face which she now recognizes as me experiencing a seizure. Since the staff informed me that I or my family should press the call nurse button if they witnessed me experiencing a seizure, my sister pressed such a button. During the seizure I kept trying to climb off the bed, but as a “fall risk,” the bed had an alarm placed on it and I was not allowed to get off without the assistance of a hospital staff member. I was told I kept “flailing my arms” reaching for the hospital bed rails. The nurse shouted for help; several other hospital staff came into the room to restrain me. My sister does not recall the exact number, but she indicates that it was a mixture of men and women, somewhere between five (5) and eight (8) staff at once, all restraining me. During this time, I accidentally reached out and pulled down a nurse by the neck. My sister asked me to “let the nurse go” because I was hurting her, and I promptly complied.

The nurse was sent to the ER to be looked at. We were told that she had a minor nail mark embedded on the back of her neck, that she was “pretty shaken up,” and was subsequently sent home. After a resident and attending physician from the psychiatry department provided a psych evaluation, we waited six hours before we were told that I was being discharged because the staff did not “feel safe” around me. I suggested to the psychiatrist that they use soft restraints if necessary because I was there for continuous video monitoring EEG and I wanted to have the observation completed so my doctor could better treat my seizures.

The psychiatrist and resident returned to my room with four (4) Chicago Police Officers and explained that, while he had previously offered to have me moved to the psychiatry floor where his staff were “better trained in de-escalation,” the offer was no longer on the table given the current circumstances. The officers told us that while they “tried for another outcome, the hospital pushed for this.” I was given the opportunity to change into my street clothes, was told they would wait to cuff me until we got outside, and was driven handcuffed in a patrol car to the 12th Unit – Central Female Lock-up at 3510 S. Michigan Avenue, Chicago, IL 60653. After spending 1.5 hours at that facility I was again handcuffed and transferred to the 18th District, 1718 S State St, Chicago, IL 60616 in a paddy wagon where I waited for 3 hours to be processed.

In summary, we were told that the hospital takes healthcare physical assault very seriously, “whether caused by medical or intentional reasons” (i.e., they were calling the police regardless of the cause even if an accident occurred). This is hospital policy and I have the photo of it as it was posted in my room. As a result, I was charged with 720 ILCS 5.0/12-3-A-1 – Battery – Cause Bodily Harm, which is a misdemeanor.

Prior to the seizure, the nurse in question and I were chatting in a very friendly manner as she prepared an IV in my right forearm. I mentioned that I am a “chill patient” and “super easy to get on with” so accusations of violent behavior and intentions desirous of causing bodily harm are inaccurate and couldn’t be farther from my personality and the behavior I exhibited prior to and post-seizure, including when in custody. I assert, instead, that according to the previously referenced “Arrest for Seizure Related Behaviors” PDF, properly trained neurology staff should have recognized that my behavior was typical of complex partial/focal seizures, should not have gotten close to me while I was reaching for the rails to try to get off the bed and should in NO WAY have attempted to restrain me (referenced in the document as a “cardinal rule”). What happened was clearly an unfortunate accident for which I apologize and wish had never transpired, but having me arrested was clearly an overreaction on the part of the hospital and for which I was made to feel punished, undignified, shamed and degraded by being arrested, cuffed and charged with a crime for a medical condition by a specialist staff that were responsible for my well-being while I was in their custody – and who should have known better how to recognize my seizures, how to de-escalate events and should know better not to charge an individual who is unaware of what is happening ictal and postictal and further traumatize them by criminalizing their medical condition.

Moreover, in an article from WTHR in Indianapolis, Ryan Keys, Epilepsy Foundation Indiana Executive Director states that, “You never want to restrain someone having a seizure because it can cause damage, it can be dangerous. If they’re down, you try to put them on their side. Make sure you can put something soft under their head if they’re still convulsing and you just stay with them until they are coherent again. But if you put your hand on them, they may actually attack because it’s a fight or flight response.” Based on this information, the hospital staff should have recognized that my response was expected for a normal person experiencing a seizure and not violent or targeted at any particular individual.

Lastly, my admission papers stated that I would be provided with medication while I was in the facility. Although I told various hospital staff in my unit when I arrived at 9:07am, including the intake nurse and doctor, that I had not taken one of my seizure medications for going on three days, post-seizure, but prior to being escorted out of the hospital by the police at 4:30pm, I informed 2 police officers and 1 staff member that I had not received any medications all day and wasn’t going to receive any at the police station and would to have them administered, but my requests were disregarded. I told the psychiatrist during his evaluation that these conditions were such that there was a “strong likelihood” that I would experience another seizure. To the best of my knowledge, he also did nothing to fulfill the script request. Since this incident, I have experienced three seizures, which is higher than normal.

I will need to explain to the judge during my trial, which has been backlogged due to COVID, that what happened at the hospital what as a result of my medical disorder (not illness – as I understand legal precedent previously meant people with epilepsy were sent to sanitariums) and in no way meant to cause intentional harm. What I would like is guidance on is what, if anything else, should be done to address the treatment I received from the hospital staff, which I consider to be excessive and clearly contrary to the training provided to hospital staff and certainly specialist neurology staff (e.g., two sources for nurses: National Association of School Nursing and American Nursing Today, official journal of the American Nursing Association) when dealing with patients experiencing seizures (i.e., they neither be restrained nor jailed). While there is a general understanding that special safety measures need to be taken while a patient is in an Epilepsy Monitoring Unit and staff are trained to handle such circumstances (see training provided by the American Epilepsy Society) I was denied this critical testing and am no longer able to see my epileptologist due to the nature of our unfortunate relationship as plaintiff/defendant, and I must now find another facility and specialist who will treat, which seems contrary to the spirit of the ADA’s provisions, because I left the facility without testing, medication, and was sent to jail for the very medical condition for which I was in the hospital originally seeking treatment.

While I was shocked by what happened, I researched these types of situations and feel the same principles apply to a case handled by Carl Brizzi, an Indianapolis-based lawyer handling a related matter, where police arrested a man experiencing a seizure stated that, “officers were not prepared to deal with people in the throes of a seizure, and that has to change…If negligent training results in a response that’s over the top there ought to be some justice for the person injured.”

Thanks for making it this far… The saga continues.