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An Open Letter To Doctors who deal with Addicts Everywhere: 

Seizures Do Not Make An Addict

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

I had the kind of adventure this past week that those of us with epilepsy do our best to avoid; and I found out how underprepared I was for it. I was reminded that even though I know seizures don’t make me an addict, Doctors often think otherwise.

Before we got to the main event (the worst, completely preventable status grand mal seizure I’ve ever had), I ignored the signs. Part of this is having a brain disorder. When I see something, I need to act on it because it’s possible I won’t see it again, even if I’m standing right next to it. It’s just how my brain works. I saw the need for more meds 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 attain. 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. And, thanks to new rhythms and products I have moved into longer periods of time without seizures, less medication and freedom from the stress and anxiety that meds usually carry with them. I am winning, doing what Doctors tell me I cannot. 

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. The lack of belief hospital staff carry when it comes to caring for those that come through their doors, means they put our lives at risk and 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 they’re 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 are seeing some crazy stuff and I don’t work there everyday. I made a decision not to work there everyday when I was very young because I didn’t want to be someone who took advantage of people like I had been. Yes, the system is broken. 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 and there are power hungry control weapons there too.  But, both of you are contributing to the struggle those with seizures face daily, because they don’t understand neurology and they judge why we’re there and let us 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.

Start doing no harm. Stop judging me for being what you think I am (addict and alcoholic) when I just 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 cannot control. You’ve told me it’s all in my head. What if it is? I heard that and I reject it. I have more to live for than you can possibly 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. I’ve sat with doctors who loved me and their job. They would have healed me on the spot if they could have.

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 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 currently in process? All, so someone in the future can have a life in the future that’s a little less mysterious. So, don’t look at me and tell me you have the answers, while you push me away and say: we’ll treat you another day. That day 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 is telling you my life is in jeopardy, you should be putting an e.e.g on me to verify, not assuming he’s an addict and can wait ’til morning.

And to the Dr.’s who believed my husband and did nothing, The Ones Who Knew I Could Die, Yet Ignored Us Anyway: You Should Not Be In Medicine. 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. The hospital is the one place I know, where a white man in a prominent position can instantly be downgraded to an addict.  It’s the place great doctors can be fired and replaced with mediocre ones who submit to how things run. But, what happens when he 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 to be given injections against your will by hospitals who use their position and your weakness to make more money? If they’re doing 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 all of 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, but the medical world acts as if judgment and power is 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: Isn’t it more important to save lives than to provide your opinion on addiction to and for someone you’ve never met? Seizures Don’t Make An Addict.

If you work on the ambulance crew isn’t it more important to help the patient than to judge them for what they may be carrying on their person or what might be sitting in their home? 

You are not required to have a personal opinion. You are there to save lives. And part of how you do that is by listening to the ones who take care of these patients every day … because they understand the situation better than you ever could. 

I know humans judge. But, when it stops you from doing the work of allowing us to live … when it cripples our futures and creates harm that never needed to be … 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.

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