The day after my first two seizures I was in the hospital so doped up that I looked like the Star Trek character, Data. My flat affect was a side effect from large doses of antiepileptic drugs. But it wasn’t just my face; my brain was weird. The drugs fought with the scar tissue in my head that wanted to cause more seizures and, although seizures are now rare, my brain has never been the same.
My life as a chaplain, as an ordained minister, as someone who could go on international mission trips was over. I just didn’t know it yet. Considering how doped up I was, I’m not even sure that had I known I would have cared.
One of my chaplain training instructors told us on Day One of our training there were only four things that could happen when a patient went into the hospital:
The patient would get better.
The patient would stay the same.
The patient would get worse.
The patient would die.
He was trying to teach us that death was normal. It didn’t take me long as a hospital chaplain to understand that death was also common. So was staying the same and getting worse.
On that Day One after my seizures I had the vague assumption that things would return to the way they had been before the seizure. I didn’t understand that things were changed forever. Much like an amputee who understood that his or her life was different, I knew something had changed. But like an amputee who thought a prosthesis would return 99% of their ability, I thought the anti-epileptic drugs were going to let me go right back to work as a chaplain. But a prosthesis is not a real leg, and a drugged brain is not a normal brain.
Years later, I tried to explain to a counselor that the drugs made me feel and act differently than the “real me.” My statement was irrelevant. The “real me” no longer existed. I will need these drugs for the rest of my life. The person they make me is the person I am.
When I was sixteen I worried about the tumor, the surgery, and the radiation causing brain damage. The damage didn’t seem to appear significant at that time but it caught up with me later, in my early thirties. I was very fortunate to have more than fifteen years of Christian experience and community before the first seizure. In my mind, I went to seminary to lead a church or serve as chaplain. In God’s mind I went so I could learn to be a Christian before my mind didn’t work quite right, before the drugs pulled me into a perennial slumber.
These are the things that I learned on Day One:
Don’t drive for six months.
Don’t swim for six months.
Don’t walk alone for six months.
Don’t be alone taking care of your children for six months.
This is what I learned since:
Trust in the Lord.
He is with me even when my mind is too foggy to see the iceberg in front of my Titanic.
God’s love is not based on what I could do before or on what I can’t do now.
My job is to respond to God’s love with love.