Learning to live with epilepsy

Sonia Raheja

For the first 16 years of my life, I had high fevers up to 106 degrees, but never had febrile seizures (fever-induced seizures). The doctors thought it was an autoimmune disease. At age 33, one winter morning while getting dressed for work, I fell to the ground after having a grand mal seizure. I remember my now ex-husband getting me dressed, firemen, and ambulance drivers in my room, and being taken to the Michigan Medicine Emergency Room.

My mom and sister met us there. They were concerned it was lupus, based on my history of childhood fevers. The neurologist came down. They did a CAT scan and a resident did three spinal taps. The results didn’t indicate anything specific. However, due to the seizure, the neurologist told me I couldn’t drive for six months, drink coffee and alcohol, and that I should get plenty of sleep. I worked for Ford Motor Company and had an intense job. I drove 75 miles a day. I slept five hours a day. I needed my caffeine! I was the breadwinner of our household. How was I going to get to work and perform?

By the grace of God, many people drove me back and forth from where I lived to Ford so I could continue working.

A few weeks later they did an EEG and called with the news. I had an 80 percent chance of having more seizures. The neurologist put me on Lamictal. I thought I was doing fine until I saw bumps on my arm. I thought it was Steven-Johnson Syndrome, so the neurologist took me off of Lamictal and put me on Trileptal. The neurologist tried other medications but they failed, causing even more seizures.

My husband at the time and I wanted to have a child. I was 35 and on a Class-D medication. There were risks. We looked into adoption. My neurologist gave us the go-ahead to try and have a baby. She said we would closely monitor the pregnancy. Everything went fine. I had one grand mal seizure due to flying from Michigan to California and not getting enough sleep. I had an aura and got myself to safety. The baby was safe. That baby is now a healthy 15-year-old teenage boy.
My in-hospital EEG diagnosed me with Complex Refractory Seizures in the Right Temporal Lobe.

After having our son, I returned to Ford. I had a grand mal seizure on Good Friday. Many people had been let go. I couldn’t rely on anyone for transportation, so I took a position in marketing at Domino’s Pizza, which was closer to home. The job was very intense.

Shortly thereafter, I developed cluster seizures (multiple seizures a day and week) and catamenial seizures (seizures around ovulation and period). I went to Mayo, Brigham Young, and Henry Ford for help. I found an incredible epileptologist, Dr. Brien Smith, at Henry Ford, which was close to me. He was the interim chair of the Epilepsy Foundation. He put me on four medications to control cluster seizures, overall seizures, and catamenial seizures. I am now on Topamax, Vimpat, Onfi, and a birth control pill for the catamenial seizures. Talk about being tired! I also have excruciating migraines.
He did in-patient EEGs, PET scans, and MEGs. He determined that I was ineligible for surgery. I had discharges coming from both temporal lobes. I had Complex Refractory Seizures that might never resolve.
Unfortunately, a disability like epilepsy takes a toll on a marriage, friends, children, jobs, finances, and other aspects of your life. My husband and I divorced 10 years ago. It was in our divorce agreement that I had to hire caregivers when I had my son. It was so costly. I went to court twice to have the provision removed. Despite winning the second time, I still retained caregivers for transportation.

I am on Social Security Disability Insurance (SSDI) and worked part-time under the Substantial Gainful Activity (SGA) limit until early 2020. People are hesitant to hire someone who is disabled, even if they are highly qualified for lower-level positions. I have two degrees from the University of Michigan: an MBA and a Bachelor of Science in Industrial and Operations Engineering. I worked to obtain benefits as the cost of brand medications is through the roof, even on Medicare. I also worked for the social interaction.

On the bright side, I created a position at the University of Michigan in the Provost’s office. It was the Disability Program Manager. The purpose of the position and project was to improve the disability situation for those on campus. I observed firsthand those with all types of disabilities. I felt I was making a difference. Unfortunately, the position was eliminated. It paid $13 per hour, $3 above the minimum wage in Michigan. I worked 20 hours a week. Yet, the university felt they could or would not continue it.

Today, I am no longer working. I am volunteering and addressing other health issues associated with my epilepsy. I find people come into your life when you need them the most. I connected with Andria Bilan through the American Epilepsy Society. Andria has been a fantastic mentor to me. Knowing my financial and transportation struggles, Andria and Sandi Chapnick kindly provided me with transportation grants.

Despite all the challenges I have faced in my life, I have never felt that my epilepsy has defined me. I know firsthand ableism exists and we all need to work together in order to create change.
I would like to thank JoshProvides for all of its help.

Sonia Raheja