You Have to Listen

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.

7 comments

  1. We are so sorry you and your family are going through this scary time. We are really impressed that you are so in tune with your body and the way you feel, and that you are able to communicate your feelings even in the midst of the onset of a seizure. Most ADULTS aren’t nearly as tuned in and many times don’t listen to their bodies or intuition to proactively take care of themselves in this way as you have. It is a good lesson for us all to try to tune in to what we are feeling inside – learn to recognize when something doesn’t feel right- be it with epilepsy, or a heart condition, or something else. Thank you for continuing to share such inspirational words of wisdom.

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  2. Thanks for sharing about this frightening experience. How cool that you eere able to give such good information to your therapist, family, and doctors. I hope you will have a full recovery.

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