I have never been so scared before. These past two weeks I have been in and out of hospitals. I have been suffering from a lot of seizures. Everyone was really concerned about me and they were next to me through every step of my recovery. Being at the hospital is very hard for someone like me. I was being kept heavily medicated to try to help stop the seizures and because of this, I was not allowed to get out of bed very often.
I have had epilepsy for many years, but it is mostly managed by medication. I have rescue medicine at home in case I have too many seizures or they go too long. I rarely have to be hospitalized, but my seizures were too out of control. I am so grateful for my letterboard, a communication partner who knows everything about me, and parents who respect my communication.
I was in a therapy session at home and I knew something was really wrong. My arms and legs felt like they were burning and I didn’t feel like I had control over my body. I told my therapist I needed help so she would watch me more closely. She noticed my arm looked like it was having a seizure, but the rest of me was fine. I kept asking for help because I knew something was really bad, even though no one could see signs. I asked for rescue medicine, so they would understand the severity of the situation. I know my body better than anyone and I knew to be clear with them. After that, I started having a lot of seizures that we weren’t able to stop at home. I didn’t used to be able to communicate so spontaneously, I mainly only answered questions. I have been working really hard on being more open on my letter board because I have a lot to share, but in this situation, my description helped my doctor figure out the problem. For those of you who use letter boards, I encourage you to share your feelings and be persistent if it’s necessary. For those of you who know a letter board user, you always have to listen.