Recently I had a seizure. I had a seizure because I am epileptic. Just to clarify, I’ve been epileptic for more than a couple decades now.
When I had this recent seizure, I cut my eyebrow open in a couple places and had to go to a hospital to get stitches. At the time I was sure I didn’t need stitches but now that they are out and I can see the marks, I realize I did. I also have two new scars to add to my growing collection of facial mutilations.
The doctor who eventually saw me at the hospital did not exactly have the best bedside manner. He asked me about what happened, what I remember, who I am. I answered appropriately and accurately (I had been lucid before the paramedics arrived at my apartment). Then… then…
Him: “What was your aura?”
Me: “I don’t have auras.”
Him: “You have epilepsy, an aura happens before a seizure.”
Me: “Yes, I know what an aura is. I had them when I was younger but I do not now.”
The doctor shook his head at me. It got even better.
Him: “Do you know what triggered it?”
Me: “I don’t have triggers.”
Him: “You have epilepsy, seizures are caused by triggers.”
Me: “Yes, I know what triggers are. I don’t have them.”
It gets better.
When he asked me what I was doing the night before, I said I had been having drinks with a friend. That was the turning point. As he shook his head at me he said “Well, there’s your trigger. If you weren’t drinking you wouldn’t have had the seizure.” I calmly explained to him that I socialize with friends regularly and sometimes that includes drinks. If every time I had a drink that I had a seizure, then I would just live in the hospital. He didn’t think that was funny. I thought it was hilarious and at the same time, it was absolutely not the first time I’ve had that conversation.
At that point, it completely escalated to where he was lecturing me on what I can and cannot do because I have epilepsy (beyond just having drinks). He had all the answers. Somewhere in a textbook he had read a chapter on neurological condition (maybe even a whole chapter on epilepsy) and so he knew what I should and should not be doing. When I asked him how old he was, the answer was “30”. Now, I am sure he is brilliant. To be working in an emergency room at the age of 30 as a doctor, that’s very impressive. But I wasn’t there to be impressed. I was there to get stitches, not to be lectured on a condition that he was 8 years old when I started experiencing. He just could not fathom that I didn’t follow his textbook and I was mad that he wasn’t respecting that my 22 years of being epileptic might result in some knowledge about the condition.
So, I called him “Doogie Howser” (which he probably didn’t get because he was barely alive when that show was running). I told him to do the stitches and let me go home. He left the room, someone else did the stitches and I insisted on being discharged. As I mentioned before, this is not the first time this has happened. A friend of mine in Calgary came to the hospital with me and while the doctor was lecturing me, she clarified to him why he was wrong.
Yes, medical professionals work very hard to be in their position. There is a huge range of knowledge that they have to absorb and a strong sense of dedication to vocation in order to be successful. That doesn’t mean they know everything. That doctor was 6 years younger than me. He would have been 8 years old when I started having to learn about my condition. Just because he has a title does not mean he knows more than I do about my own body and my own brain.
I listen to my neurologist and my neurologist listens to me. We talk about what is happening and what solutions may be. I think he has been proud of the accomplishments I’ve done and I think he is wonderful for being willing to accept that each condition is different for every person (one of many reasons). This was from the very beginning and I knew he was great because he listened to all the things I thought of, that I wanted to do or try and helped me find ways to do them. When I didn’t like a medication, he listened to me about why and what would be an alternative option.
The important thing here is the listening. The emergency room doctor wouldn’t listen when I was telling him about something I’ve known for 22 years. My neurologist is one step away from sainthood because he does hear me. My brain and my body are still mine and I am not a textbook or a lab rat to be tested on. My condition is not the same to me as it is for each other person. I might be a statistic but that doesn’t mean I have to be treated like I don’t know what is happening.