One of the greatest difficulties for people with epilepsy (and their families) is the profound instability that seizures can cause in daily life. At the moment, Ben has had 3 beautiful seizure-free days. His personality is completely restored and he even seems to need a bit less rest than normal.
I’ve really enjoyed having Ben be fully Ben, his personality fully restored and our relationship back to normal. But I also know that one of the few things I’m enjoying right now is fleeting and can disappear at any moment. My love, my best friend, becomes a stranger to me when he has his seizures. This is certainly not true with everyone who has seizures. But Ben’s seizures occur in a very specific location in his brain, and they profoundly affect his personality. Also (and this is extremely unusual as well), the seizures or the after-effects of the seizures can last for days.
Because he’s been seizure-free for a few days, Ben is more hopeful and encouraging. I, on the other hand, am walking on eggshells waiting for the next episode. This is where our our observations and knowledge of reality differ greatly.
Ben recently started a new medication. He will be increasing it weekly for the next week (at least; there is room to go up even more). This makes the time of quiet even harder for me. I know that the medicine may work, and I want to enjoy the days when Ben is not having seizures. But I also know that while the medication may work for a time, the doctor has consistently reminded us that each new medication seems to work for Ben initially but over time, they all stop working.
I am trying to trust God with each day. But the awareness that the volcano can blow at any moment always overshadows everything for me.
Isaiah 33:5 – 6
5 The Lord is exalted, for he dwells on high;
he will fill Zion with justice and righteousness,
6 and he will be the stability of your times,
abundance of salvation, wisdom, and knowledge;
the fear of the Lord is Zion’s treasure.