Shawn P. B. Robinson

Day Fifteen and Beyond of My Encephalitis Journey

This post is a continuation of a series looking back to my experience in 2017 with Encephalitis. For the previous post, click here.

Friday, February 10, 2017 and Beyond

The last two years have been difficult. There have been many challenges—a lot of them have involved simply not knowing what’s going on, but there has been the constant exhaustion and other struggles as well.

I ended up returning to work after being off for about five weeks. My church (where I was a pastor) welcomed me back and told me to just do what I could. They understood I needed extra naps would be somewhat limited. They were quite willing to accommodate whatever was needed. As the months passed by and they continued to be patient, I found I continued to need the naps. I struggled with busy situations, remembering what was going on, taking on responsibilities and more.

Eventually, I had to tell them I could not continue. Instead of improving as time wore on, I began to go downhill. I ended up working for about eight months “doing what I could,” but “what I could do” ended up being less and less all the time. The little bit they were expecting from me was proving to be far more than I was capable of.

I thought at first I would need only a two to four months off to try to recover, and the church was open to trying an extended break. I stepped down temporarily as pastor of my church and committed myself to rest and recovery. Unfortunately, the rest did not solve the problem. I grew more tired and struggled more with memory and concentration.

I am now a year into what I had hoped would be a 3-4 month rest (max) and have had to commit to being off long-term. I don’t know what that means for the future, but who does know what their future holds? Recovery from an illness such as Encephalitis is usually slow and difficult. I have had to learn patience and to learn to be at peace with accomplishing very little.

I continue to write as I’ve been encouraged to do. It is something that I’m told is helpful for my recovery, but it is also something I enjoy and seem able to do in limited amounts. It’s opened the door for a fun hobby to be able to write fun children’s stories and to make adults with a childish sense of humor laugh. It’s also opened the door to connect with so many of you. I consider you friends, though I have not met many of you in person.

I look back over the last two years, and I see that I am not the same person I was before. Something like this changes a person. There are the challenges I face now, of course, but there are also the blessings. I have had to learn to live a slower paced life. That’s a hard lesson to learn, but it is good as well. I have learned more compassion and patience for others. I have learned how frail and weak I can be.

I have also learned how to be strong in the midst of my weakness. For me, it has involved growth in my faith in God, challenging me to trust more and more each day. It has involved learning to be satisfied in life, even though some of the things I love are out of reach. It has involved learning to trust others to be there for me when I wish to stand on my own.

I hope you have enjoyed this short journal over the last couple of weeks, walking through my experience. It has been a life-changing time for my family and for me. But I am filled with hope—hope for the future and hope in God.

All the best to all of you!

Shawn