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Testimonials
My Story by Betty Lou S.
 I suffered my first Grand Mal seizure when I was nineteen. Doctors couldn't tell me what was causing the seizures in my left temporal lobe. It was very scary but I got on medication and my seizures were brought under control. As long as my seizures were under control, I could drive and work without difficulty.
I'm 48 years old. I was born in New Jersey and came to Delaware in 1990 with my husband and daughter. We own our own home here in Middletown, DE. Eleven years ago I accepted a good job at the local high school as the assistant cook. My husband is a truck driver. Our two incomes allowed us to buy our own home.
My life started to unravel about 2 1/2 years ago when I had my first break through seizure. Maybe it was that I was older because all of a sudden the medication wasn't as effective anymore. At first it was one seizure a year, then one every six months, then one every three months. My doctor switched the medications I was taking. He also said he had to report my condition to the Delaware Department of Motor Vehicles which meant I had to give up my driver's license.
To make matters worse, in November 2004 I also had a seizure at my job. The school knew I had a seizure disorder but trusted it was under control with medication. Up to that point I did too.
When I had that break-through seizure at school, the liability was just to great to continue to work in the school's kitchen. Early retirement seemed to me be my only option. The school district told me I would receive a disability pension. I was also told I could maintain my health insurance with a small co-payment.
I began to look for other benefits that would be available to me. I did a lot of research on the internet, contacted agencies and somewhere along the line; I heard the name Freedom Center For Independent Living (FCIL-DE). I found it was a place where I could get help figuring out what financial help would be available to me.
I had contacted the Social Security Administration to see if I could get disability benefits of some kind. I was told I was not eligible because I did not have a condition serious enough to keep me from working. It was serious enough to put me in the hospital a couple of times, but I guess that doesn't count.
I found out at FCIL-DE that I could appeal the denial of Social Security benefits. With help from my Independent Living Specialist, I filled out the correct forms needed for the appeal and got the additional information from my doctor Social Security said they needed. We mailed the appeal in May 2005.
We waited to hear back and when we didn't, we made a call to Social Security, and we determined that the forms we had mailed in had been lost. The forms would have to be completed again. It was suggested by Social Security that I go to their office to fill out the forms to make sure they would not get lost again.
FCIL-DE went to bat for me. The Legal Aid Society was contacted to help with my appeal and explained that it was much too risky for me to use public transportation to get to the Social Security office since my seizures were so severe and unpredictable. Someone from Legal Aid came out to my house and helped me redo the appeal.
As of August 2005 I've provided everything Social Security told me they needed to evaluate my request for reconsideration. I'm waiting to hear back. I hope this time the news is good.
At FCIL-DE, I found out that the Department of Vocational Rehabilitation (DVR) has free training programs. I used to have an office job but that was before computers. It's possible that I could get the computer training I need to get another office job.
It's obvious I shouldn't even consider working until I get my seizures under control. Recently my medications were changed again. My doctor told me if these new medications do not work, then the only thing left to do is surgery.
The surgery would be very risky because the seizure activity is near the optic nerve and could affect my eyesight. Also, the surgery may not have an impact on the seizure activity at all.
It's a challenging time for me. I think, though, I would still be going around in circles if it had not been for The Freedom Center for Independent Living. I learned so much from FCIL-DE about how the system works. In the end we have to educate ourselves so we can fight for our rights. FCIL-DE gave me such a valuable education but it isn't just about fighting city hall.
Sometimes I call FCIL-DE just to chat. Maybe I don't have anything specific that I need help with but they seem to know that for me talking is a kind of therapy. Sometimes I get so scared about what the future holds for me and how it will affect my family. I feel FCIL-DE really understands what I'm going through and I feel less fearful after talking to my Independent Living Specialist.
Recently, FCIL-DE suggested I consider getting a service dog. Now that's something I never thought about. A service dog would be trained to assist me when I have a seizure. I will be talking to my husband and daughter about that.
I feel safer knowing FCIL-DE is in my corner. Whatever happens, my family and I are not alone.
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Freedom Center for Independent Living
400 North Broad Street, Middletown, DE 19709 (302) 376-4399 1-866-OUR-FCIL
TTY: (302) 376-4397 FAX: (302) 376-4395 E-MAIL: info@fcilde.org |
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