Saturday, April 2, 2016

Hanging with the Marijuana Activists in front of The White House

Cutest activist in the crowd
     This is the speech I gave today at the Emergency National Mobilization to Deshedule Cannabis, an event organized by Adam Eidinger. When I read about this act of civil disobedience in The Washington Post, I contacted Adam and offered to speak as someone with epilepsy, even though I am a much better writer than public speaker.
      My hands and voice get all shaky, and I hafta read straight from the words so carefully written and rewritten. It was quite an experience, and I'm glad I went.
     Here it is:

Take a very close look at me because I am a Freak, even among my own kind. I want a cure for others with my disease but not for me. All I want is control, on my terms. No brain surgery; no more scary new drugs.
Ecstatic Fyodor
I have Epilepsy, but not convulsions. I stare into space and sometimes walk around. My seizures are NOT painful at all, but rather mystical, like dreaming with my eyes open and traveling to a place that is beyond Heaven. Famous people who also had this type of seizures include this man, who is described as having Ecstatic Epilepsy, and this one.
Angry Vincent 
Although I’ve had hundreds of seizures since my first one in the early1980s, I’ve lost consciousness only about 20 times. There have been two car crashes, the most recent was last June, when my miracle drug of 26 years stopped working and I hit a guardrail on 95 South.
I was hopeful when my doctor prescribed a new drug, sure there were better ones for controlling my disease by now. This particular drug came with a warning about a rash that could make my skin fall off…on my face. I took it for a couple of months, but it didn’t control the seizures nor the insomnia that goes hand-in-hand with epilepsy. Doctors say I probably have seizures in my sleep without realizing it, yet another reason to keep me medicated, 24/7.
Besides insomnia, epileptics also must deal with anxiety, mood swings and problems with concentration and short-term memory. This means that in addition to anticonvulsants, we have medicine cabinets filled with sleeping pills, antidepressants, benzodiazepines, and stimulants, prescribed by behaviorists with limited knowledge of how epilepsy affects the brain.
When brain surgery was mentioned as an option after the new med didn’t work, I walked out on my doctor in early December and went around seizing up to three times a day for two months.
I went to an epileptologist next, ready to try the next new pill because I was beginning to feel like a zombie.
None of the drugs available for epilepsy are pretty, but I just survived one of the dirtiest, most expensive ones on the market. It was approved just three years ago and has a black box warning for life-threatening psychiatric reactions, including aggression, hostility, irritability, paranoia, suicidal behavior and….here’s the real kicker…Homicidal ideation.
Please get a clue, DEA
The company marketing the new drug became impatient when the DEA took “too much time” in deciding how to classify it and filed a lawsuit to speed things up. Their complaint was the millions of dollars being lost for every month doctors in the United States could not yet prescribe the drug to people like me.
So, the DEA slapped a Schedule III controlled substance label on it, comparing the abuse potential to that of Ketamine. Part of their reasoning for taking so long was having so few human studies to analyze.
I took the first dose on February 8 and admitted myself to Walter Reed Medical Center 22 days later in a state of extreme mania, with paranoid delusions. My behavior was scaring my family, and they didn’t even know the crazy thoughts going through my head, gaining speed with every passing moment.
Never in the past had I experienced those symptoms, not while sober nor under the influence of any drug, legal or illegal. And, by the way, it still didn’t control my seizures.
I was released after two nights and three days in which my doctors forced me to go cold turkey off the drug while being confined to a small room with EEG wires attached to my head. Someone was with me at all times, watching, and the EEG monitor had a video camera running the entire time. The bathroom door wouldn’t close all the way due to the wires. I couldn’t bathe nor could I have any medication to relieve the severe anxiety I experienced, nothing to help me sleep.
To someone already experiencing paranoid delusions, I felt like they were hurting me on purpose, punishing me for the crime of being me.
Ironically, there was another alternative available the entire time, a more easily digestible formula of my beloved Depakote. I’ve been seizure-free for almost a month but still take something to help me stay asleep at night and now, a benzodiazepine to relieve the anxiety from being put through hell by people who take a vow to Do No Harm.
Trust me when I say, they DID.
The reason I’m here is to let you know epileptics are all around you, and pharmacy companies make billions of dollars off the medicines that treat our disease and the many symptoms that go with it. To most of you, we are invisible, because having epilepsy isn’t a secret you share unless absolutely necessary.
I don’t know if CBD oil could control my seizures, but it will be my next step if Depakote Sprinkles stop working. I qualify for the exception allowed in the state of Virginia because so many drugs have failed me.
For now, I’ll go home to Springfield and hope to remain seizure-free for another five months so I can get my driver's license back.
The way our federal government and the DEA are handling medical marijuana is beyond ignorant. In my opinion, it’s criminal, and the connection to pharmacy companies and big business is pathetically obvious.
One more thing before I say goodbye. Please remember, I went through this entire ordeal over a condition that doesn’t even hurt me when it happens.
To be totally honest with you, my seizures make me feel incredibly…high.