When I turned 16, I got my driver’s license. I didn’t have a car of my own; my parents shared theirs with me. I hadn’t been extra excited to drive before I passed the test, but once I did, I embraced the freedom I felt. I could leave the house on my own. I could run to the grocery store, or go take an hour long scenic drive with nothing but my thoughts and good music running through my head.
I have four daughters. As they reached the permit age of 15 ½, I was excited to teach them how to drive. Their dad bears less patience than me, and I believe they enjoyed this extra bonding time with their mom. The three oldest girls all passed their tests, and began driving on their own when they were 16.
Then we have Bella. Bella is the fourth daughter. She has epilepsy. She goes for periods of time with no seizures at all. She is currently seizure free for 8 months. She has gone over four years without any.
While there are obvious reasons a person cannot obtain a driver’s license if seizures are recurring, and not controlled, it is sometimes not possible with a person with epilepsy to drive for other reasons. Because Bella is on so much seizure medication, her mind moves more slowly than the average person. Her reaction time is prolonged. It wouldn’t be safe for her or for others around her to be behind the wheel.
As her older sisters were learning how to drive, I felt caught between a rock and a hard place. I was so excited for them as they reached this milestone, but I felt a constant tug pulling me backwards, as I was fully aware that Bella would not likely be learning to drive or getting that license when she turned 16. As I celebrated her older three sisters getting their own set of keys, I tried to keep the enthusiasm down a bit.
Bella is now 20 years old. She rides her bike, and is learning how to use public transit in the town where we live. Relying on a bus system that can take two hours to take you to a place just 30 minutes away by car is irritating. She is currently in school, and has a school bus to bring her there and back home. But this will end in May. She wants so badly to be independent, and I can only imagine how heart breaking it feels to have no control over it.
We have met adults who have adult onset epilepsy. These people had regular jobs, and then had the rug swiped out from under their feet. They can no longer drive, and must use other means of transportation, often resulting in catching rides with someone else. This is helpful to Bella, as she does not feel so alone. As her mom, though, it does not give me a way to fix it.
The struggles of living with epilepsy are endless. We say that the epilepsy must not take over our lives, but so much of what comes with it is life altering. It is hard to not let it get you down. The tears that come from your beautiful, young 20-year-old that just wants some independence, just wants to be normal, just wants to grow up to be like her big sisters are so hard to take. There is no way to make those feelings go away; so, I hug her, I listen to her, and I cry with her.
The next time you get behind the wheel of your car, take a moment to think of the adults out there that do not have that privilege. The freedom the driver’s seat gives us is often taken for granted. Use it, and enjoy it, and do something good for someone today!