Bad news and illnesses make people sad. We all hate to hear that anyone is not well. It seems that every time Bella has a bout with seizures, at least one person will ask when she is back home from the hospital, or when they see that I seem to be more calm and/or sure of myself and the situation, “So, she’s all better now, right?”
I struggle with how to answer that. Every person with epilepsy suffers from it in their own unique way. Some have a seizure a day, some have one a week, or a month, or a year. Bella can go months or years without any, but when she has one, she is most likely to have at least 10-15, and has often had hours of uncontrolled seizures. She has clusters of seizures that make our world stop, until she is administered enough medication to once again give us control.
On a daily basis, Bella does not have seizures. She does, however, take four anti-epileptic medications, and she also has a Vagus Nerve Stimulator (VNS). So, is that “all better?” I mean, she is not currently having seizures. But two times a day, every day for the last nineteen years, she has been taking two or more medications. Each of these medicines have side effects. Every five minutes, the VNS sends an annoying signal that tickles her vocal cord and makes her voice sound funny.
Considering what she takes, she is super healthy. Her epilepsy, though, is not cured. She is out of the woods again. She is no longer in the hospital, she doesn’t have an IV, and she is not sleeping all throughout the day. We feel extremely grateful that during the course of her life, we have time and time again been able to find a good combination of medications and treatments to keep her seizures at bay.
She is better, but I cannot honestly say she is “all” better. I realize, though, that the person asking that question often will feel better if I do. So a smile, I nod, I say a little white lie, and I tell them, “yes, she is fine.”