Purple is the color for this campaign theme because it's also the color of www.purpleday.org and Epilepsy awareness. A lot of artists have had Epilepsy of one type or another. They say Van Gogh, Lewis Carroll, Georgia O'Keefe and Michelangelo had it too. It's heartening I'm in good company. I have Temporal Lobe Epilepsy brought on by a Traumatic Brain Injury (TBI).
In a deluge of wine drinking with a friend in 1997, I fell and conked my head on the floor. I've bumped my head a number of times before but it was like the walls of my skull were saying "This time for real." I sustained the TBI which affected me from the very root of my soul then, and continues to do so today. Coming out of a coma I had an Epiphany: Drinking, for me, was no longer an option if I wanted to stay alive. It is miraculous I didn't die that weekend.
Not only did it take me over a year to recover, my brain has never quite made it back to "normal". I began having simple partial seizures right away. I was given a drug that I used for a while but it stopped working. So I stopped taking it. I didn't have the money or insurance for it anyway. The seizures seemed so infrequent at that point that I didn't think it was much of a problem.
Well, it was a problem. By 2007, I began having seizures so often that I had to go to the hospital. I had found a neurologist who started giving me medications to stop the seizures. I went through a variety of combinations and dosages all of which seizures would eventually break through.
In 2009 my neurologist started suggesting brain surgery. That sounded like a nightmare. I gave the anticonvulsants my best shot.
I am currently on 3 meds. The side effects are horrific. I have insomnia. I have trouble talking, remembering things or staying focused. I'm tired all the time. I feel like a ghost.
Some people's Epilepsy doesn't respond to medication. And I am apparently one of those people. Funny, I never had any issue with my brain on drugs in past decades!
Today my seizures have increased to at least once a week. Sometimes twice a day. I can't drive. I can't stay at a regular job. I have complex partial, and secondarily generalized seizures. I tense up. I lose consciousness. I wander around; I can do something dangerous if I have a seizure by myself.
I want to be well. I need to get surgery.
Fortunately I have CountyCare here in Chicago. I am preparing for Left Temporal Lobe surgery with an outstanding medical team at Loyola University Hospital. I'm meeting with my surgeon 10/29/2014. I will be scheduled for surgery within the next 4 weeks.
Here's the rub:
I'm an artist. I'm out of work. I have no money.
I have been trying to get my ducks in a row for this. I am in the middle of applying for Social Security Disability. I have a lawyer and everything but the government is saying they won't even consider a decision until 3 months AFTER I've had surgery. My lawyer assures me I will get SSDI but it will take much longer than I was hoping. I will get to the third hearing eventually. But I've run out of time.
I need help to get through the next few months while I recover from brain surgery. I need to cover my cost of living expenses of rent, utilities, and a car payment. My cat needs food.
So...that's where you come in.
Help! Donations! I need money. Any amount large or small will help. I need to be going under the knife, and, well, the saw with a sense of serenity. That everything is going to be alright.
I will be working on paintings and drawings. With your donations, you will be receiving a signed original print from me if you leave your name and address.
The good news is that if everything goes well there's a 70% chance of the surgery making the seizures go away. It will take at least a year to get off the drugs. The bad news is that surgery on my left temporal lobe will affect my short term memory.
Another good news is that my local Epilepsy Foundation has been a Godsend in support. They also have an art therapy program! After I recover I hope to go there to start a new open studio art class for people with Epilepsy with help from my own non-profit MUSE, Inc.
Life is a precious thing for those of us who have made it here. I believe I was spared for a reason. I've got to make the best of the time I have left.
Please help that happen. Thank you.
- Anonymous Anonymous
- Natalie Ensminger
- Patricia Fletcher
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