Here is another post in the series Faces of Epilepsy. Martha tells the story of her brother Stephen and the complexities and fullness of his life.
My brother, Stephen Yocum, had epilepsy as long as I can remember. Stephen was 3 ½ years older than me, yet the difference in years never felt that far (partly because he was only a year ahead in school). For Stephen, epilepsy was only one of many of his challenges that all seemed to merge together. I will try to give you a picture of who he was and how epilepsy is woven into that.
As an elementary schooler, I vividly remember riding the bus with my brother, occasionally seeing him around at school, and then playing the afternoons away with him outside riding bikes or simply running around. He was my brother and part of ‘my normal’. It always puzzled me when other kids would talk about him and all of his differences. My brother was in that special class in school; he was mildly mentally retarded, had ADD, and those helping him never knew exactly how they wanted to label him. They knew he had a variety of issues, yet never seemed to know if there was any relationship between them or not. Meanwhile, I didn’t understand why all the kids in my class would make fun of those in his class (they just didn’t know these kids or understand them).
As Stephen got closer to adolescence his seizures increased. He had a couple of grand mal seizures (both happened while at school and then he went to the hospital). Mostly, though, he had partial complex seizures. These too, became normal to me. Stephen would all of a sudden freeze (in whatever position he had been in), stare straight ahead, and repeat over and over again ‘I feel sick’. This usually lasted about 2 minutes and then he snapped right out of it and would go back to what he was doing as if nothing ever happened. Because I was used to these, I too would go on as if nothing happened and rarely even talked about the fact he had just had a seizure. It became normal for me to look after my brother (though that became hard on him as he was older). When we were in public I was struck with how much people didn’t understand seizures. I remember going to baseball games and having everyone around us stare at us and try to get medical help for him. We knew what was going on and that he’d be fine in 2 minutes, yet no one else knew that.
Over time, there were phases when Stephen’s medicine would be changed in some way. These were always tricky times as they never knew what would ‘work’, what side effects he may have, and how the combination of medicines may work. Once he was in high school this became more of an issue as there seemed to be an increased issue with his behavior (anger and frustration by not being understood). This led to more changes in medication. We never knew where the epilepsy started and stopped in relationship to his challenges.
Stepehen did graduate from high school (a major accomplishment for him). After high school, he successfully lived on his own in an assisted living situation and held a job with Goodwill industries. It was during this time that it was determined he was autistic. As we began to understand autism and all the implications of it (most of which fit Stephen to a tee) we also found out that epilepsy often was present in these individuals. (As the whole autistic spectrum is talked of more now, I’m not sure where he would have fit on this or if epilepsy is common with certain parts of the spectrum and not others).
Stephen became very involved in Special Olympics and helping out wherever he could (he loved stuffing bulletins at church)! People were very important to him and he had a way at making everyone around him know they were special. (Those with more challenges in life seem so much better equipped at doing this)! When Stephen was 27 years old, he came down with a flu. He did this as much as you or me would get a flu, yet this time ended up being different. He quickly went from the flu to pneumonia to complications with his kidneys, lungs, and heart. I found it interesting how he had numerous (I believe it was 26) causes of death, one of which was his epilepsy…..yet again a testimony to not knowing where one challenge started and another one left off.
More than anything, Stephen lived his life fully, despite the challenges (or maybe because of!), and always sought out ways to add joy to those around him.
In celebration of Stephen’s life and to raise awareness about Epilepsy, please share this post.