This post was sent to us by a young man who has a brother diagnosed with Autoimmune Encephalitis. You can share your story about AE. Please read on for a sibling perspective:
June 10, 2013 marked my brother Sammy’s return from Duke after 8 long months. There were no balloons, parades or red carpet moments, just a quite, simple happiness and of course, a family again. Sammy seemed okay, actually better then I had expected. My last visit to see him in Durham, North Carolina was quite painful for me. Sam was agitated and impossible, and I felt like I was in the line of fire. And I hated seeing my mother having to be constantly in that situation; I could see the pain she was in, even though she pretended to be okay. I felt bad for my mom, sad for my brother and guilty because I could not wait to leave; it was a horrible combination of feelings.
Sam was quiet the first week he was home, but not in that lost, flat, lack of awareness kind of way like when he first got sick. It was actually a good quiet, he seemed to be observing, taking everything in and happy at times. Of course, he was no longer the rowdy and annoyingly clever little brother he had once been before his illness, the inflammation in his brain and his downward spiral, but I am slowly accepting that. He is different now, we need to all know that. I also know that my mother, in certain respects “mourns” the loss of the boy he was. She has not ever spoken a word of this to me, but it is written all over her face.
Of course, I walk on egg shells frequently, depending on the type of day Sam is having. I remember all to well his violent outburst, his physical attacks, although somethings are a bit more of a haze. It is hard to imagine that something that has monopolized our lives for the last three years, is at times a fog. My mother calls it a “survival fog”. I tread carefully, but not always happily. I have exploded at times, sobbed uncontrollably and I am still angry. But angry at who, or angry at what, or who to blame ….I do not know. What I do know is that at 16 years of age, I wanted to be teenage selfish, I needed help, I wanted attention and I was not okay. But I was stuck in an amalgam of guilt, frustration, intellect, compassion, fear and anger, which riddled my body and mind far to often. I tried to throw myself into my schoolwork, but it threw itself back in my face hard. My A’s turned to C’s, restful sleep a thing of the past, and the ability to concentrate had started to disintegrate. My dad said this too shall pass, it just all took too long, a pace I was not accustomed to. My emotional needs have always been met by my parents often before I even had to verbalize them. I swear, my mom reads minds! I had been spoiled by parental affection, their patience and time, and now I felt alone and scared, I was being shuttled back and forth between grandparents and family friends, my mother was living in Durham, and my father was traveling back and forth in between work.
Over the last three months, I have managed to stake my claim on some of that time, and it’s been great, teenage great! I actually feel stronger and more independent , a strange thing to say, but I do feel that I am a survivor as well. I now possess many of the skills and attributes one can only acquire by overcoming great obstacles. Of course, my strength is tied to my brother’s strength. And yes, he is annoying me again, but I have come to appreciate it; it has become a sign of his progress.