This is part of a month-long series that my teen daughter and I are writing about her life and learning to live with epilepsy. To start at the beginning, click here.
One of the hardest parts of dealing with epilepsy is dealing with uncertainty. The unknown is part of any chronic disorder, I'm sure, but it's one of the most difficult things to cope with after a new diagnosis. The fear of the unknown can change who you are if you're not careful.
One of the best things that helped me at the time was talking to other people who were more educated about it than I was. People reached out to me at the time of diagnosis and showed me that there was hope.
I had many fears in those early days. I still do but they've changed and become less scary as we've become more educated and experienced.
But after Beth's initial diagnosis, she and I were plunged into an entire existence of uncertainty. Would she have a seizure at school? Would she have one while she was on the stairs? On the jungle gym outside? While she was eating? While on a field trip? While in the bathroom alone? And on and on. The fear was enough to make you breathless at times.
And that wasn't even taking into account the fears about the medications. Would it hamper her cognitive abilities? Would she be too tired to stay in school all day? She was just learning to read and would it interfere with learning? Would it change her personality?
These were all very real fears. But you have to learn to handle them because the alternative is to hide in the house and stop living. Believe me, I wanted to keep her home with me and never let her out of my sight. I'm not ashamed to say that I haunted the halls of her school for weeks and volunteered more than ever that first year. She needed and I needed it.
As Beth said in an earlier post, "It’s definitely not fun wondering when I’ll have my next seizure, who it will be in front of, where I’ll be, and whether I'll fall and get hurt. But that’s the way it is."
If I had any advice to someone else dealing with a new diagnosis or a change in a diagnosis, it's to reach out to other people who've gone through the same thing. I was so lucky to find an adult at Beth's school who had epilepsy. In those early days, her reassuring me that a normal life was possible kept me going. And I pointed her out to Beth all the time. "Remember Mrs. G. has epilepsy, too, and she's just fine. We'll get through today just like we do every other day."
At that point, talking to an adult probably didn't help Beth. NOT talking about it and playing with her friends helped her. But Mrs. G. helped ME and kept me going.
*We're getting closer and closer to the end of this series. We'll be back to talk about Beth's specific seizure history, her disastrous year (last year) of school, some resources, and some guest bloggers. ;)
*If you'd like to read all of our 31 Days posts about living with epilepsy, click on the button on the sidebar or start here. And if you're wondering what the heck is going on and who Beth is, click here. :)