Between Us

A Face of Epilepsy

by Julie Schmidt

With my husband, Bob and
son, Gregory

My three middle-of-the-night grand mal seizures this past weekend jolted my girlfriends from their sleep. It wasn't supposed to be that way. It was supposed to be a fun-filled weekend reunion for the five of us - all friends since the 8th grade.

Even though we have been friends for years and they know I have epilepsy, they had never seen me have a tonic-clonic seizure. The experience really frightened and alarmed them and they scurried to find my mother-in-law's number where my husband and son were spending their weekend. My husband calmly told them what to do and we avoided an ambulance trip to the E.R.

Gregory

Since having brain surgery my seizures occur less often and are nocturnal (during sleep) but they still happen with enough frequency and force to remind me that epilepsy is and has almost always been a part of my life. The experts say that apparently, when I was an infant, febrile seizures after my measles vaccine left a scar on my left temporal lobe.

Looking back I realize that my parents' way of dealing with my seizures reinforced in me the realization that epilepsy is only one part of my life. They made sure that epilepsy would be a challenge - not a crutch or excuse. My parents didn't give me special treatment. They treated me the same as my brother Brian and sister Donna. They prepared me and allowed me to become independent at 18 years of age. I supported myself in marketing for I.B.M. for several years before I fell in love with and married a co-worker, Bob.

Certainly epilepsy has negatively impacted many aspects of my life. Because of epilepsy I couldn't drive for three years and had to take two buses to work and two buses home each day. Because of epilepsy I had to undergo brain surgery. I was discouraged from having a baby because my seizures were never sufficiently controlled. Because of epilepsy medications I've lost and gained and lost lots of weight. Because of epilepsy I grew up having weird sensations or auras throughout my body (I thought every kid had these!). I always had to wear a "MedicAlert" bracelet.

I look back and realize I tried to hide my epilepsy because I was worried what other kids and adults would think. I often ask God, "Why?" because of my epilepsy. And in response, within a few days, I inevitably get reassurance. For it's because of my epilepsy that I have an adopted son. (My husband and I adopted Gregory in 1996 and now we can't imagine loving a biological baby more!) It's because of epilepsy I have a special challenge. Because of my epilepsy, I have volunteered at the Epilepsy Foundation's Family Weekend Camp each year.

I have met some amazing people because of epilepsy. I am better able to help another person. Because of my epilepsy, strangers or friends feel comfortable to share their problems. Because of epilepsy, I am better able to educate others about it. Because of my epilepsy, someone will tell me their secret - about their epilepsy.

While epilepsy presents its share of hurdles and barriers, it's often how we respond that makes all the difference. My story is also about what I have learned from those closest to me - my husband and my parents. I hope that what I have learned with and from them is also a help to you.

If you are a mother - your view of your epilepsy will influence your child's view. If you are ashamed of your epilepsy - your child will be too. If you use epilepsy as a crutch and an excuse - they will too. But on the other hand, if you learn to talk about epilepsy with others - your child will too. If you advocate for yourself and others with epilepsy - you set an example for your child. If you view epilepsy as only one part of your life - your child will too. If you learn to cope with epilepsy and keep it in its place - your child will too.

If you are a teenager or adult woman -- view your epilepsy as a challenge to make you a better, more empathetic person. If someone doesn't want to be your friend or have a relationship with you because of epilepsy, they aren't worth your time. Don't give up until you find friends or a partner with whom you can enjoy two-way, caring and supportive relationships.

You can make all the difference as to whether or not epilepsy is one part of your life OR an overwhelming, all-consuming statement about your worth and person. I encourage you to make sure that "epilepsy" is not a label you wear or a barrier you hide behind.

Epilepsy is only one part of your life. Don't neglect all the other parts.

Julie Schmidt raised $43,000 for epilepsy last year!

Originally published in News & Views, Summer 2000, a publication of the Epilepsy Foundation of Los Angeles, Orange, San Bernardino & Ventura Counties. Reprinted with permission.

Update March 2001

I am excited to share some of my personal experience with other women with epilepsy through the national Epilepsy Foundation's website. I am writing to you today through a bit of a tired haze. I am sure many of you know what I am talking about. I am thankful that I have been seizure-free on my current medications since mid-December but, during parts of the day, I still face the world with great tiredness.

I am thankful I have an understanding and supportive neurologist who is working with me to adjust my medications to find the dosage and combination that is best for me. I hope all of you find the same.

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