First, Let Me Say This, Seizures Don’t Make Addicts: Start Treating Your Patients Who Have Seizures

I had the type of adventure this past week I do my best to avoid — and I wasn’t prepared.  It reminded me that even though I know seizures don’t make me an addict, doctors often think otherwise.

I ignored the signs. This was before we got to the main event (the worst, completely preventable status grand mal seizure I’ve ever had). Part of this is having a brain disorder. When I see something, I need to act on it. It’s possible I won’t see it again. This is true even if I’m standing right next to it. It’s just how my brain works. I saw the need for more medication and then, I didn’t take them. Big mistake!

That was just the first snag in a very long line of rope that was about to unravel. So, I own my part of this. I should never have let myself need to enter a hospital. 

My dog barked at me and licked my hands the day before.  She doesn’t lick me. We don’t have a licking relationship, so I remember thinking … “Maybe she’s trying to tell me something. I should take more meds.” I didn’t do it because I had no real precedent. And, I’m not an addict.

I have reached a state with my epilepsy called status epilepticus. It’s a status you never want to reach. Doctors told me once I got here I would never not seize this direction. That wasn’t entirely true. I have had smaller seizures since. Thanks to new rhythms and products, I have moved into longer periods of time without seizures. I take less medication now than I used to. Stress and anxiety are lower and manageable. I am winning, doing what Doctors tell me should not be possible. 

There are many dangers to status, however. One of the biggest ones I’ve found is that doctors don’t understand it and some don’t believe it even exists. Many hospital staff lack the training and belief necessary to care for those who come through their doors. This lack of belief puts our lives at risk. They often assume addiction. For this reason, I’ve done what I can to avoid hospitals. I have emergency meds. We stay away from the emergency room as much as possible. But, sometimes it’s the only way.

I don’t say this lightly, so please, if you work at a hospital take this as a heads up to take us seriously:

Just because you have a seizure patient in your e.d. doesn’t make them an addict. 

I realize hospitals see some crazy stuff and I don’t work there everyday. That was a choice I made when I was very young. I didn’t want to take advantage of people like I had been. Yes it’s a broken system. I hope you haven’t been the one to see it.

There are beautiful souls inside the walls of our hospitals who desire to care for the sick. There are power hungry control weapons there too.  Both are contributing to the struggle those with seizures face daily. Lack of understanding the patient struggle is often met with superiority. Judgments and lack of partnership in care mean isolation. We know it’s on us. Blame doesn’t help us. Pity doesn’t either. Making your patients wait their turn when their life is on the line is negligent. Refusing to listen is too.

Start doing no harm. Stop judging me for being what you think I am (addict and alcoholic). I need help breaking the thing that is in the process of taking my life. Remember: Seizures are killing me, not signaling my need for detox.

You don’t know me. I have something I can’t control. You’ve told me it’s all in my head. What if it is? I reject your pronunciations. I have more to live for than you can imagine.

You say: It’s all your fault, It’s your genes, your demon.

I can’t: + stop it, +heal it, or + undo it. Because, I would have already done it. You can’t serve up the answers on a platter, either. Because … you would have already done it. Wouldn’t you? I’ve sat with doctors who loved me and their job. They would have healed me on the spot if they knew how.

Do you realize how many doctors appointments and studies I’ve been through to get answers already? Talk with a patient. You’ll probably get an education. I’ve talked with many of you who’ve given me reason to believe you don’t know the answers. After years of study, medical school and focused research … you’re still searching.

Do you realize the piles of research I’ve been through and the studies that are now in process? All, so someone in the future can have a life in the future that’s a little less mysterious. Don’t look at me and tell me you have the answers. Stop pushing me away saying: we’ll treat you another day. Tomorrow may not come.

I listen to the voice that tells me I can. So, when will life be possible with you?

You’ve been wrong about a lot of things. You told me I wouldn’t get married. I wouldn’t have children.

Why? Why do you want to dispense despair?

Yes, seizures may be the new way to get drugs. They represent a class of people to a class of people. But, seizures are also something many of us are dealing with who have no connection with addiction.  I have legitimate life and death concerns. I have friends who have died experiencing less and you are asking me to experience more? What happened to first do no harm?

If the person who cares for me says my life is in jeopardy, put an EEG on me to verify. Do not assume he’s an addict and can wait ’til morning.

And to the medical professionals who believed my husband and did nothing. Did you know I was dying or are you that unfamiliar with epilepsy? Either way, corruption means you should not be in medicine. You lied to us. Even if protocol is calling the shots – life should matter more.

I’m not aware of what is happening during a seizure, so my husband fights for me. He has learned to be quiet and firm, but is often treated like the bad guy. At the hospital, even a white man in a prominent position can be seen as an addict. It’s the place great doctors can be fired and replaced with mediocre ones who obey.

But, what happens when my care taker can’t be with me every moment? … yes, that’s right, I lose. Because you don’t know me, don’t care and neurology is a mystery to you.

Legitimate concerns don’t matter. Hospital staff will lie if necessary to save jobs and face. Do you know how frustrating it is to be treated as less, because your condition isn’t believed to exist? Do you know what it’s like when hospitals use their position to give you injections against your will? They exploit your weakness to make more money. If they did it to me, they’ll do it to you. 

The most recent unraveling happened in the ambulance. They wouldn’t take us to the hospital where our doctors are. We ended up at a hospital closer to home, but so far away from help. They refused to connect us with the one E.E.G. tech who could help us because they didn’t believe us. It was evident they believed we were trying to use seizure status to get drugs.  

She went home for the night and I kept seizing. Except, no one told us that until morning. They just lied about it and let us wait – while I had seizures all night long. 

The E.E.G. tech arrived the next morning and literally saved my life. But, not before I had the most massive seizure I’ve ever experienced. And, there was no reason for it to have happened. I could feel the veins popping up in my neck when it was over. 

The thing was, we were at the hospital in time to stop this. But, doctors made judgment calls and did harm. We knew what was happening. But, we didn’t have the belief of the hospital behind us. They were more powerful and they used their position against us. 

This should not be. This is not the first time this has happened. I have seen a different side of eternity twice now.  I am home, but my mind is struggling and I am having trouble with my words. I’m glad seizures don’t make addicts. The medical world acts as if judgment and power are more important than my life. I am tired of losing to those of you who are supposed to help me. I am not an addict.

Here’s my question: How does giving me your opinion on addiction help me?  Seizures Don’t Make An Addict.

If you’re a first responder: Does judging the patient help them?

You are not obliged to have a personal opinion. You are there to save lives. And, unfortunately your opinion can kill people. It’s not something we like to talk about. It’s not something most people are talking about. But this era of right we feel we have to make calls on people’s lives … it’s actually killing patients.

Your job is to listen. You do this by listening to the ones who take care of these patients every day. They understand the situation better than you can. They live and breathe not only a condition, but the person they care for.  

I know humans judge. But, when it stops you from doing the work of allowing us to live, it becomes a problem. When it cripples our futures and creates harm that never needed to happen, you’re the addict now. Addicted to power, addicted to your own opinion, addicted to harm. And, the effect you are having on the world … it’s disaster. You’re killing people with the belief system that seizures make an addict, and you’re wrong.

Seizures Don’t Make An Addict.

Do you feel limited by your hospital? Have you experienced something similar? I’d love to hear from you.