Finding Support on My Journey

I have a combination of epilepsy and receptive and expressive aphasia, a language disorder that affects how a person communicates, due to an arteriovenous malformation (AVM) that caused a severe brain hemorrhage in 1990. I was 19 years old then, and it left me in a coma for a period. When I awoke, I realized I had lost my ability to communicate.  As I went through rehab and started to regain my ability to talk, I recognized what I could no longer do. Despite this, I felt it was important to be positive and work on getting back to where I was before the brain injury. 

Something started happening that I couldn’t ignore, though - seizures. When they started, I would have this brief foggy feeling. It began as an aura and would go away without me feeling bad afterward. That evolved into a weird sensation that would run from my neck to my stomach and then I would feel nauseous. This went on for years and left me with memory issues. If I had a seizure, I would be confused afterward. I was unsure as to where I was and who was with me, or who wasn’t with me. This was particularly disturbing when I was out walking. My aphasia was worsened by my repetitive seizures. It became my life.

Outwardly, I presented myself as a person without any signs of deficiencies. When I interacted with people, they didn’t see a person with an obvious disability, so when I repeatedly asked for clarification or help, or for them to speak slower, I knew I was going to see “that look”.   People would look at me like I was not trying or was just dimwitted. It was extremely frustrating because it was hard to explain my condition and at times they didn’t understand, or even try to.  This was even worse when speaking on the phone and having to hand the phone to my husband to speak for me or hear what someone was trying to communicate. I felt extremely alone. 

At times, I even had to explain my condition to my healthcare providers as they were unaware. Trips to the emergency room for real and serious concerns or even surgical procedures were made even worse because of my unrecognized aphasia. This is a difficult position to be in and even scary at times. I feel it can impact how or if I am heard and the quality of care I receive. I must work harder to advocate for myself and constantly explain the hidden impact of my epilepsy.   

Throughout the years I was on a wide variety of medications to treat epilepsy, yet the seizures kept occurring. They got stronger and stronger. As they did, my dosages got stronger, too, but it didn’t stop them. Almost 32 years later I was referred to an Epilepsy Center in Pennsylvania. The care I received from everyone, especially my neurologist, was not like any experience I had before. My neurologist worked with a team of physicians who determined that I might be a candidate for laser ablation surgery. I had my surgery in June of 2022. It was minimally invasive, and my recovery was shorter than I expected. That surgery stopped my repetitive down-spiraling seizures. 

In the two years since, I haven’t had any seizures. Without the interruptions that my seizures caused, I have been able to focus on therapy which has helped me restart a lot of what I had given up on ever being able to do again. I can read and do math. Every day I continue to improve. I am so fortunate! Taking anti-seizure medications will never end, but not having the seizures that interrupted my life is something profound.

Finding support on my journey was critical, including that of my neurologist who really helped me understand what was going on as I was being evaluated for procedures to stop my seizure activity. The Managing Epilepsy Well Network (MEW) was an excellent tool to help on my journey. HOBSCOTCH helped me with memory strategies and visualization, and PACES helped me learn calmly and positively. It is great to connect with others who can relate through epilepsy support groups online. To anyone going through this too, I recommend positive thinking and trying to look on the bright side. Mentally, go to places that make you feel good – it makes a difference!

Advocacy is also important. It was important to tell my story. Learning occurs when we tell our stories and so does relatability. If you feel embarrassed, you shouldn’t. The more informed we are, the better outcomes for us all!