Tuesday, December 29, 2015

A Passion for Compassion

Let’s take a minute to take a step back in time. Imagine it’s 1997. Before the Great Recession, before the housing boom, before the tech bubble, before 9/11, before Bush stole the election, before Y2K. 1997 was a wonderful time in America. I had every reason for hope for the future. I was in college and I was on my way to a career that would both fulfill me and financially support me. I was going to make a difference!

Then I woke up in the ER. My life was turned on its head and nothing has been okay ever since. I came home after class and went to bed. My head hurt. I woke up in the ER. I came to with a phone in my hand. My mother was asking me what happened. I said I didn’t know. Sometime later a doctor came in and told me, “You had a seizure, you have epilepsy, we don’t know why, take these meds and see a specialist.” That was pretty much the last time an ER doctor told me something new and helpful about my epilepsy.

Since then epilepsy has been my entire life. I have researched it deeply. I could edit the wikipedia page about epilepsy. I actually might do that. Just for fun. But I digress. As it is a risk with epilepsy. My brain wanders off for a bit and I might fall down and bite my tongue. Biting my tongue is the worst, the intense pain lasts days and days after a tonic-clonic seizure. You might know it as a Grand Mal seizure, but the scientific term is Tonic Clonic. I cannot predict when it will happen.

Epilepsy has been known as The Falling Sickness or The Sacred Disease. It is one of the first diseases mentioned in Chinese Medical texts dating from BCE. I’ve read some of those texts. I wanted to know more about my medical ball and chain. I am obsessive when it comes to research. I researched the hell out of epilepsy. One of the earliest, effective, medical treatments was marijuana.

It comes up in the texts again and again. Hundreds of years of epilepsy and the one treatment I want to try is illegal. I would try anything to have less seizures. I’m in the wrong state. Epileptics in 24 other states have the chance to treat their seizures. The Pennsylvania House of Representatives are not my friends. Senate Bill 3, The Compassionate Use of Cannabis, will never get voted on in the House of Representatives. They will never give me relief from seizures. I tweet to my advocate friends online, around the world. I envy those who live in the “right states.” People ask me why I haven’t moved yet. I don’t know why. Maybe because I don’t want to sell my house. I shouldn’t have to leave my whole life behind to get medical treatment.

Thousands of Americans are having less seizures because of cannabidiol CBD oil and I could be a criminal just for trying. I wish I could somehow convince Speaker of the House, Mike Turzai, not to cry over medical marijuana legislation and bring it to the House floor, whether or not he likes it. He ran away from cannabis activists once. He cried in committee. I wish he would see someone he loves have a seizure. I don’t want to wish a seizure upon anyone, it’s the worst thing in the world. But maybe if he saw someone he loved fall down and vomit, he might have a little compassion. I wish he could understand what a seizure really is.
I slide in and out of consciousness. Sometimes I can talk and sometimes I can’t. My brain is awash with electricity and consciousness is a dream. I am trapped in my body, half-able to hear what is being said around me and about me. My words cannot come out. Nobody can hear me screaming inside. I can’t even understand everything that is being said. Semi-consciousness is weird. I hate to be called SHE when I am in the same room. “She is unresponsive.” Post-seizure brain is scared and confused and angry. Time is slow and heavy. My lips cannot yet form words. The lights pierce my brain like an ice pick.

Once I woke up in a ambulance and everything sounded scary and German or Japanese. I thought, “This must be what it’s like to be in a foreign land.” My brain couldn't make sense of the noises and voices. It was sensory overload when my brain could not process information. I wondered if I was like that man who had a head injury which caused him to speak fluent Mandarin. Maybe I lost the ability to understand English. I thought it was the time I was in car accident. I was back there again, but this time with a different result. I felt like a time traveler to a parallel universe. I survived that crash with nary a scratch. When the ambulance came they didn’t take me to a random hospital, based on whoever decided to call 911. I didn’t need the paramedics and I could tell them so. I thanked them for coming. I’m not always so lucky.

So back to 1997... Things were medically terrible, but medical marijuana was already legal in California. I figured it couldn’t be long before the rest of the country went that way. I figured I would have access to medical marijuana in Pennsylvania soon enough. It is a known, effective, treatment for seizures. I did my research, I’m an adult. I thought I would be able to make an informed decision for myself. I was wrong. The Pennsylvania House of Representatives chooses to ignore centuries of scientific evidence. They don’t trust me to trust myself.

My advocate friends in Harrisburg are hopeful. I am less than resigned. I’ve watched enough hours of LIVE Pennsylvania General Assembly to already know. Nothing is going to get done. Isn’t it next year already? Surely next year we will get compassion. I have lost all my hope for my home state. I am tired of having seizures. Sometimes I cannot remember my middle name. I slur my words and bump into things. I fall over and hit my head. The diagnosis has been the same since 1997. We don't know why you have seizures. It just happens sometimes.

I am so tired of waiting. I really thought that this would be done by now. 1997-Katie believed in the future. I don’t think that way any more. The House Republicans are happy to push us off. The sick and disabled people of Pennsylvania don’t count for much, when the Chairman of the Health Committee is being paid for by the Pharmaceutical companies.

My local district Representative supports me and medical marijuana, but his support doesn’t matter if there’s no vote. Even when SB3 makes it onto the docket, they just skip right over it, tra la la la la. Please may I introduce the Girls AAA Basketball Team from Wherever, Pennsylvania… The House has been promising and promising that it’s juuuuuuuust about to do something for years now. Next week, next month, next year… Pennsylvania is a big disappointment to me. There are rumors of up to 99 House amendments to the Senate bill that passed months ago. Everyone wants to get their fingers in on it, restricting this, removing that. It is a medical marijuana bill that doesn’t allow for smoking buds. Whatever. I’m just glad I didn’t have a seizure today. I hope to say the same...but you never can tell. I never know when I’ll have a seizure and wake up on the floor or falling down the stairs or dead.

It’s a sorry day when I consider moving to Detroit. At least Michigan has medical marijuana. The city of Detroit might be a better choice for me than the entire state of Pennsylvania. Philly and Pittsburgh are decriminalizing marijuana but that doesn’t do me any good. I should have been treating my seizures with CBD decades ago.

~ Kathryn Slagle