I have long been a silent supporter for medical marijuana. But I was afraid to really speak out. I was a Nancy Reagan’s “Just Say No” kid. Would the moms shun me at the school if they knew? It was safer to stay silent. So what happened? Charlotte Figi happened. When Charlotte’s Web hit the news I cried. I was so happy to see this beautiful little girl reclaiming a life that she almost lost due to seizures. I was so happy for her and her family. And then I cried for my children… They have to live with a mommy who sometimes screams and falls down. That is the worst effect of my epilepsy: my kids have to see me have a seizure. If you’ve seen a seizure you know, it’s pretty much the worst thing in the world. If you haven’t, lucky you. I hope you never do. Unless you work in Harrisburg or DC: I would love to have a seizure in front of you. You will be rightfully frightened. Seizures change everything.
Parents in Colorado and New Jersey and Pennsylvania are fighting to get their children marijuana. How could I stay silent? It IS a matter of life and death. Seizures kill. Epilepsy is a terrible disease that holds us in a cold grasp until we die. People die from seizures and seizure related injuries everyday. Over 50,000 Americans lose their life every year. For me it’s all about seizures, everything in my life is about seizures.
Medical marijuana can SAVE lives. The Epilepsy Foundation supports medical marijuana. The nation’s largest epilepsy organization is advocating for marijuana. That’s huge! The seizure preventing effects are visible and undeniable. ALL epileptics need access to this natural medicine that is recommend by Surgeon General nominee Sanjay Gupta and my personal doctors. I’d like it if Pennsylvania would allow me that courtesy. 23 other states would. I’m tired of my government treating me like a criminal. I’m not a bad person. I just want to have less seizures. I want to stay conscious at ALL times.
The Pennsylvania Government denies that there is any valid information in the hundreds of studies not done in Pennsylvania. All the scientific literature does not matter to them. They insist that they would have to re-do the studies here. But they won’t do the studies. Science doesn’t matter to them. The fact that the federal government has a patent on cannabis (Patent #6630507) means nothing to my so called Representatives.
I read the studies. The information is there for the taking. The internet grants us immediate access to governmental documents and scientific journals. I am convinced. Marijuana has been known for CENTURIES as a treatment for epilepsy. Why should I suffer for being born in the wrong century and state? I just want to be able to grow a plant and stay conscious. Marijuana can help. There is anecdotal evidence. There is scientific evidence. I’ve had too many seizures to just sit by and wait for Pennsylvania to grow up. For years I suffered in silence. I felt so alone in my unstable state of consciousness. I thought that nobody understood me until I met other people living with epilepsy. I need to educate the world about my deadly, deadly disease.
I was diagnosed with Temporal Lobe Epilepsy was in 1997. I was 20. I went to bed with a headache and woke up in the hospital, talking to my mother on the phone. She asked me where I was. I didn’t know. I had no idea why I was on a phone. The last I knew I was sleeping. I could not believe that I had a seizure and was in the hospital brought by ambulance. It was the first time, but not the last.
They kept asking me what kind of drugs I was on. That made no sense. I don’t take drugs. I had taken a biology exam and came home to sleep. They tested me. No drugs. I was confused and angry. I had another seizure coming out of the bathroom holding the warm container of my own urine. I don’t remember much else. Days later I saw a Doctor. I can’t remember his name, he was just the first of dozens. He told me I had Idiopathic Temporal Lobe Epilepsy. It was a diagnosis that I could barely understand despite my years of college anatomy and physiology. He also said Seizure Disorder but I liked that term even less.
I understood I had a seizure or I was trying to understand that. But I didn’t really believe it. And I certainly didn’t believe that just because I had one seizure meant that I was going to have another. I was wrong. Poor Past Katie, she was so wrong. That wasn’t my first seizure. It was just the first time somebody saw me have a seizure. Over time, as I learned more about my seizures, I realized I had hundreds of un-diagnosed seizures. I have had seizures my whole life. I will have them for the rest of my life. Hopefully they won’t kill me. I think that every day.
My diagnosis has not changed over the years. It’s still Idiopathic (Unknown cause) Temporal Lobe (part of the brain on the side, controls memory and emotions and so much more) Epilepsy (lots and lots of uncontrolled burst of electricity in my brain.) There is still no reason, no cause, no warning when a seizure might happen. My brain has too much electricity. Yee-Haw! It’s a rodeo!
I’ve gone years without seizures. Ah, the good years; the sweet seizure-free years. The longest I went without a Grand Mal (a massive, convulsive, secondarily-generalized seizure) was seven glorious years. Now I am happy for seven days sometimes. It’s been 14 days today. I am finally feeling normal again. My body has more or less physically healed from the last seizure. The depression has lifted. But who knows for how long?
This year the record is 42 days seizure-free. Then I ended up in the hospital with gallbladder disease and had a cluster of seizures in June. They played fast and loose with my seizures in the hospital. They gave me so many different injections and bags of saline and radioactive isotopes. I don’t know what they gave me. I had a seizure in the bathroom. I bit my tongue and bled all over myself. I wandered the halls and looked for my husband whom I had sent home. I couldn’t remember doing that. I was dazed and confused: lost in the hazy aftermath of a seizure. At least I didn’t fall out of bed that time. I woke up covered in blood and vomit and had no idea why. Nobody in the hospital knew. They don’t know how to treat me. There is no way to treat me after a seizure. All I can do is sleep and wait for my brain to reboot. Seizures are exhausting, for days, for weeks at a time. It’s not just the half hour that I lost, it’s everything that comes after. My most recent seizure brought me a bruised rib. But I didn’t fall down the stairs! I fell into the banister instead.
I would try any plant that could help. I’ve tried all sorts of minerals and supplements that I found referenced in the medical texts as a treatment for epilepsy. Marijuana comes up again and again. There is enough evidence for me and 85% of Pennsylvanians. But I don’t have safe access to the strains that are curing epilepsy. Charlotte’s web isn’t available in Pennsylvania. The variety matters. Think of marijuana like peppers. You wouldn’t say that an Orange Sweet Bell Pepper was the same as a Ghost Pepper. Jalapenos aren’t the same as Banana Peppers. They are all different strains of the same plant. Plants are like that. When you are in a state with marijuana prohibition, there is no choice but one: whichever one your Dude has at that point in time, which changes all of the time. Nobody else wants to consume marijuana that won’t even get you high. Children in Colorado are allowed to but I’m not.
The Commonwealth of Pennsylvania doesn’t trust me to live my adult life and make decisions about my body by myself with the advice of my doctor. More than one doctor would prescribe me marijuana if they could. I have been told more than once. Neurologists talk about it with me at length. We are all hopeful for “new” treatments. But I am in the wrong state for that.
Is Pennsylvania part of the United States or not? Nearly half the country would allow me medical marijuana. It’s as free and clear as beer in Colorado and Washington. But not Pennsylvania. I am stuck here in the prohibition years. No medicinal plants for me. My seizures don’t matter to the legislators of Pennsylvania.
Seizures are being prevented. How can you allow us to go without treatment? It is a cruel and unusual punishment.
And that’s why they call us Pennsyltucky.