Never Give Up

I was in my 40s when epilepsy became part of my life, and I never expected it to go in that direction. For a while, I had absence seizures, with little complication, and then they turned to focal impaired awareness seizures. A neurologist started me on seizure medications that immediately changed my world. Adjusting to most of them was difficult, and they made work and paying attention very hard. Worst of all, the seizures didn't stop, and they became more frequent. 

Then one night, while sleeping, I had a tonic-clonic seizure. My husband was away on a business trip, so I was alone and had no idea what had happened, but it was very scary. The next day, my brother took me to urgent care, and the doctor thought I had a virus, even though when I got home, I realized my tongue was black from being chewed on. My regular doctor set me up with a new neurologist after that, who officially diagnosed me with epilepsy and tried to help. After two years of medications not working, she referred me to a local epilepsy center.

My seizures became as frequent as multiple times a week or even multiple times a day. They made me unable to work or drive, and my self-confidence plummeted. After a year or so, I was told I had the option of trying epilepsy surgery. They would do a brain tissue ablation in the area where they pinpointed the seizures originating. I decided to have the surgery. I spent three weeks in the hospital with 12 wires inserted in holes drilled in my skull, and then a few months after that, they did the ablation. I went 13 months with no seizures, and it was beautiful. I even got a car and started driving again.

In month 14, the seizures came back, and they haven't stopped since. Medicine probably keeps me from having them all the time, but they won't completely stop them from happening. I've learned to live with this as part of my world. It's impacted my marriage, my friendships, and my whole life. My husband is my hero and has taken care of me through everything. He is the reason I have a full and great life. I refuse to let it control me, and I will do all I can to smile every day.

Having seizures long-term has caused trouble with my memory and speech. My seizures are in my left temporal lobe, which rules memory and speech. The surgeon who did my brain ablation warned us that the side effects could impact both of these things, and that worried me the most. I'm a very verbal person, and the thought of having my language impacted was scary. The surgery was four years ago, and there are impacts. My short and long-term memory has been affected. There are things my husband says I've told him in the past about my childhood or college years, and I no longer have any memory of them. Many of the memories of vacations we've taken and experiences are gone. There are people I've met in the past that I can no longer remember. I'm working and doing very well, but I have to be very careful about note-taking and following up, or I could fall behind and make mistakes that my job cannot support. I work hard to ensure I can continue to have a job that gives me the satisfaction and income I want.

Life could have made me hard. It's not just my epilepsy, but it's everything that's happened on this journey as well. I refuse to let life control me, though. I have my ups and downs, and there are days when it's hard. Sometimes, I let myself feel sorry, but I refuse to give up enjoying life because of it. I still have seizures approximately every 30 days. Last week, I had three in 24 hours. Despite this, I will not stop looking at what's awesome, and at what I can do.

I decided to tell my story because when I read about someone else who refuses to give up, it keeps me focused on doing the same. If anything I say can help someone else, it's worth telling. Never give up. We can feel so bad about ourselves that we let the pain and frustration pile up. Everyone handles things in their way, but we have to remind ourselves that we are human. Even if we are flawed, we are still wonderful. Look around and see the beauty and possibility in life.