Not Living the Dream: Lessons Learned While Waiting

Note from Dean Storelli: I have known Michael since 2000, when he showed up at Duke as a freshman. He had been living with epilepsy since high school. Michael is an endurance champion: After 12 years, he has found a job he just about likes. At 36, he got married, and for the first time since high school, he has a chance to live without seizures. Here are some of the lessons he has learned along the way.

Physical Suffering

Just give up. “Sometimes, you just have to give up. Last week in the hospital, everything hurt: my arm, my back and of course, my head. [Michael had surgery to remove a benign lesion in his brain.] There was nothing I could do about my arm. It hurt because I was lying on it for six hours. It was numb and sore, but that would go away. My head hurt because I just had surgery. There was nothing I could do about that either.”

Go down swinging. “But other times, you can fight. My back hurt because the ‘smart’ bed kept adjusting itself, and the software just couldn’t get it right. This was a problem that could be fixed. After many conversations with the nursing staff, I convinced them to unplug the bed. Life was much better after that!”

If you have to act, act. “When I had my first seizure (it was in high school), I said to myself, ‘Oh, they’ll go away.’ I was seizure-free for one year. After the first really bad one (waking up injured on the sidewalk), I started to wonder, ‘How long is this going to take to fix?’ Over the next ten years, the doctors and I tried many little tweaks. It was livable, but not perfect, so for a long time I said, ‘If it’s not broke, don’t fix it.’ But eventually, the tweaks stopped working. Coming to terms with the problem, looking at the statistics, it was clear: the doctors and I had to dive in and do something—even though it was scary.”

Call it what it is. “For many years, I didn’t want to name or explain what my issue was. Part of it was I didn’t want people to misunderstand me. (Historically, people with epilepsy have not been treated well.) So I thought it was better to deny it. But once you admit it, you can start to come to terms, both mentally and emotionally, but also practically: learning how to take the bus, for example, because I’m not allowed to drive. If I had been wearing a medical ID that time I collapsed on campus, maybe the doctors could have figured out what was happening a lot faster.”

Marriage

Learning to have hope. “I didn’t grow up in a happy family, which left me with a lot of fears: ‘Can I be a good spouse? Will I be just like my father?’ I had the desire to get married, but I was also fearful. So, I adopted a ‘Let’s just see what happens’ mentality. It sounds like a cliché, but going to counseling helped. The fact that I had that fear was already a good sign. Doubt contains the seed for getting past that fear. It means you are already paying attention.”

I’m not sure there is just one path, and our ability to plan is severely limited. “On a missions trip to Russia, I met a guy who claimed he had the next 10 years ‘all planned out.’ I have never really thought this is a good approach to life. It is better to wait on God. There is always a number of choices we can make, and He is always there to help—even when we make bad choices. I don’t mean try to make bad choices. I just mean don’t worry too much if it’s the ‘perfect’ option. Just make sure you are listening to God. Comparing your story to somebody else’s and trying to replicate it rarely works.”

Learn how to work out difficulties. “Instead of worrying about finding the right person, worry about learning how to relate to—and get through difficulties—with the people you already know. Work at becoming the right person.”

Work

Whatever you think you want to do, that’s gonna change. “Maybe it’s just my personality, but I’m not sure I have ever had a job I fully loved. There is nothing that I have ever done that has felt like ‘my destiny.’ Sometimes, you just gotta do something and look for something a little better later.”

Just try stuff. “A lot of times, you are just not going know what you are good at and what you enjoy doing. You just gotta try. If you are not good at it, no problem, just try something else.”

 

Resources

Job is another “all star” patience champion. If it’s been a while, try reading through the book of Job quickly or check online or in a Bible app to listen to the book. The story especially comes alive in The Message audio version, available free through YouVersion—Dean Storelli