In this third series of “success post encephalitis,” I’d like to open by acknowledging some of the great comments that survivors and caregivers have sent in response to these stories. A few remarked that it took some pressure off the need to work so hard to hide the residuals. Others said it reminded them to be thankful for the small blessings. For most, they accept that life is more challenging, but they have learned to appreciate at least a few things about their new selves.
Earlier this year, I had the opportunity to meet Chris Maxwell at the Encephalitis Global conference. Chris and I share a couple of roles … author and speaker, and on top of that, he’s also Director of Spiritual Life at Emmanuel College. Chris’ gaze explores the eyes of who he’s speaking to, as if looking for their meaning. His laid back demeanor that conveys a genuine caring for others is likely one of his ingredients for success.
When I asked Chris “What does success look like for you post encephalitis?,” he reflected on an occasion that is familiar to many of us. A friend, colleague or family member who utters that unknowingly impudent statement: “It doesn’t seem like your brain is as damaged as you say it is.”
Perhaps Chris’ leadership tendency led him to use this as a teaching moment versus a point of frustration. His response began with an MRI image tucked away on his iPhone that revealed the scar tissue that damaged his left temporal lobe. He divulged his post-encephalitis struggles with mood swings from anti-epileptic meds, the need for sleep, and the war to remember a name.
Chris’ bravery in being transparent sparked questions that many of us get. And similar to my question, his new friend asked him, “Do you view success differently after you almost died from encephalitis?”
And boy does he. He has embraced his new life, stating that “success is realizing and accepting that:
- Small things are important
- Laughter is of greater value
- Crying is a medicine
- Naps are dear friends
- A good night of sleep is my best friend
- True friends do not look down on me because of my struggle to remember
- True friends don’t tell me my struggle to remember is just like their own experience through aging
- People who do treat me poorly because of my struggle do not control my life
- People who do treat me poorly because of my struggle just need to be forgiven
- Writing is a method of therapy for me
- Writing can then become therapy for my readers
- Telling my story is a method of therapy for me
- Telling my story can then become therapy for others
- Taking my medication is wise
- Instructions from a doctor are not bad news but are helpful guidelines
- Finishing an assignment is important
- Forgetting a name does not take away my love for that person
- Writing and using images and putting words into a mental rhythm help this brain remember
- Reading each day—even slowly—can help me focus
- Giving the brain a workout helps its development but also makes me more tired
- And, music is a friend of my brain”
For some survivors, encephalitis defines them now. The glass is half empty. But what I found refreshing about Chris’ response was his perspective on what’s going well. In his words, “The best days are those segments of time when I have honest conversations with clients as I counsel them—I am more compassion post-illness. The best days are those segments of time when I write a story for my next book, tell a story to an audience needing to know they are not alone, watch a ball game with friends, take time alone to reflect and journal, watch a TV show and relax, and stare at the beauty around me and appreciate the many things I ignored before I almost died.”
Some great lessons you’ve shared, Chris. Thanks for your thoughts and inspiration. And good luck with your seventh book coming out in November.